Resilience Kit

Finding out you have ovarian cancer can come as a huge shock. It can bring up a range of intense emotions.

Everyone is different and there is no right or wrong way to react to these emotions. The important thing to know is there is usually plenty of support available from health professionals and those close to you to help you through this difficult time.

‘Resilience’ means finding the strength to adapt and recover during tough times. Our Resilience Kit aims to provide tools you may need to develop and maintain this strength.

Not all the information in the kit will apply to everyone. However, we hope to give you and those close to you reliable information to help make this challenging time a little easier.

Ovarian Cancer Australia’s Resilience Kit has been supporting people living with ovarian cancer since 2008. It is regularly reviewed and updated. It has been developed in close partnership with a team of health professional experts working in cancer care and, most importantly, with people who have experienced living with ovarian cancer.

Those with a diagnosis of ovarian cancer have identified the Resilience Kit as one of the most valuable support resources we provide. The kit contains information to help Ovarian Cancer Australia you understand every aspect of living with ovarian cancer – including diagnosis, treatment, support services and life after an ovarian cancer diagnosis.

You can access further information through our website (ovariancancer.net.au). You may also like to subscribe to our monthly email newsletter and access support forums and webinars. We can also connect you with other people via support groups held around Australia.

For inclusivity this kit uses the term ‘people impacted by/with ovarian cancer’ to include people of all gender identities who are impacted by ovarian cancer and their partners, family and friends, carers and significant others. Ovarian Cancer Australia wants you, whatever your gender identity or sexual orientation, to feel safe to openly discuss all aspects of ovarian cancer with your treating medical team or other trusted healthcare professionals, at any stage of your illness.

We hope everyone with ovarian cancer and those close to them will feel comfortable reading our Resilience Kit and use it to find out as much as possible about their situation. We sincerely hope you will contact us at any stage of your illness for further help and support. Call 1300 660 334 and speak to one of our support team members.

Ovarian Cancer Australia is the country’s leading organisation for ovarian cancer awareness, support, advocacy and psychological research. We are committed to saving lives and supporting people with ovarian cancer.


We are a not-for-profit organisation founded in 2001 by people directly affected by ovarian cancer. Our mission is to support those affected by ovarian cancer, give them a voice, facilitate research, and raise awareness on a national scale.

It is the most frightening thing in the world to be diagnosed with ovarian cancer, especially at the age of 32. Calling Ovarian Cancer Australia for the first time was like chatting with a lifelong friend. I felt instantly supported, comforted, understood, respected and validated. My experience mattered. I mattered.

I was diagnosed with Stage 2B ovarian cancer in 2021. I felt so many overwhelming emotions at once – numbness, shock and fear to name a few.

A close friend gave me a Resilience Kit and after reading it, I called the Ovarian Cancer Australia Helpline and was immediately connected to my amazing ovarian cancer nurse, Di. The advice and support she gave me through surgery and chemo helped so much. I am forever grateful.

FINDING OUT

Most people feel incredibly shocked and upset when they are told they have ovarian cancer. It is very natural to feel flooded with strong thoughts and emotions at this time. Most people say they feel frightened, angry, anxious, guilty, confused and upset. “Why me?” is a common thought for many people. Others have a deep sense of loneliness and/ or sadness.

Your feelings may change from day to day or even hour to hour. You are likely to feel very unsettled and upset until you find a way to process the news. You may also have concerns for those close to you and their response.

It may reassure you to know there is no right or wrong way to feel or respond during this time. But after many years of talking to people with ovarian cancer, and those close to them, we know there are some useful things you can do soon after your diagnosis to help you feel a little less overwhelmed.

Feeling alone during this time is not unusual. The important thing is to know where you can get information and support. By knowing about these things, you and those close to you will be better able to comfort each other during challenging times. We hope the information in this kit will help you work through your emotions both during and after treatment.

It was so nice to get the Resilience Kit. I appreciated it very much as it was comforting to see others knew what I was going through.

SHARE YOUR FEELINGS AND BUILD SUPPORT

Ovarian cancer is too big to live with by yourself. Sharing your feelings with those closest to you may help lighten your load and ease anxiety. The love and support of those you trust is usually an important part of the healing process. Don’t be afraid to lean on them during this difficult time and accept any offers of help.

Not everyone has a network of friends or support around them to help them through this difficult time. Feeling isolated and alone is extremely hard and it is important you know that you don’t have to ‘do it alone’. The Ovarian Cancer Australia Support and Information Helpline is available Monday to Friday. To speak with an ovarian cancer nurse please call 1300 660 334, or email support@ovariancancer.net.au. They will be able to offer ideas for support in many areas throughout your treatment and care.

No matter how tough this journey may become, you don’t have to travel it alone.

Some people find it easy to talk about how they are feeling. Others find this more challenging. It is important to talk to people you feel comfortable with and only when you feel ready. Being honest about how you feel will help others understand how to best help you.

No one person can offer everything you need. Talking to someone outside your immediate support circle is often helpful. They may give you a different perspective and help you work out practical ways of coping.

Good people to talk to might include:

• your family GP

• your specialist doctors (oncologist, surgeon)

• a specialist cancer (oncology) nurse

• other healthcare professionals (physiotherapist, dietitian, social worker, psychologist or counsellor)

• your family minister, priest or other spiritual adviser

• your partner if you have one, and other close friends and family

• members of a cancer support group.

  Please see Chapter 4: Support for details.

I was blessed; people came out of the woodwork wanting to help. It was so lovely and helped me so much.

Each person will want different levels of information: some may want to find out everything they can and read extensively; others may find the amount of information available overwhelming. Not everyone will find the same resources useful. At different times during your cancer diagnosis, you will have different information needs.

TELLING OTHERS

Telling others about your cancer diagnosis can bring up emotions for everyone. Those close to you are likely to want to support you in any way they can. However, not everyone may respond in a way you might expect. Share only the information you feel comfortable with people knowing. You may choose to tell close friends much more than you tell some family members or your work colleagues. This is okay and it is your choice. Not everyone needs to know everything.

How you tell people may vary. Telling people in person might be preferable for some relationships, but for others this may not be possible. Sometimes sending a message via text or email is easier and allows people time to process the information before responding to you. You may also prefer family members to tell the people you want to know.

Other people’s concern and support is wonderful, but constant phone calls and visits can sometimes be exhausting. Let people know when you are too tired or upset to talk. Most people will understand and won’t feel hurt by this. Ask family and friends to help you with this process.

Some friends were not comfortable talking about cancer and they could not relate to me any more. Others were really supportive, which helped me so much.

The tips below may be helpful:

• Ask someone you trust to take on the role of ‘information provider’. They can do regular email, text or social media updates to keep most people informed.

• Create a Facebook page or a personal blog keeping family and friends updated on your progress.

• Nominate a good friend or relative to be the main contact for people who want to visit during your hospital stays. They can organise a ‘visitor roster’ to space out your visitors, allowing you time to rest during the day. A visitor roster can also be helpful when you are at home feeling unwell or during treatment.

• If you do speak to people, you can let them know you can only talk for a few minutes, or that you will call them back when you have more energy.

• Set aside a time each day for rest and ask friends and family not to contact you at this time.

Unbelievable! With the help of my family, I could keep going.

LOOKING AFTER YOUR NEEDS

It may not come naturally to put your needs before others. However, looking after yourself and saving your energy will allow you to focus on making choices that work in your favour.

As time passes you may find it easier to cope. But for now, the tips below may help:

• Listen to your body. Rest when you need to, but also try to get regular gentle physical activity.

• Eat a variety of nutritious foods to help give you strength to manage treatments and their side effects. (Read ‘Managing symptoms and side effects’ in Chapter 2: Treatment.

• If possible, keep to a regular sleep pattern. Committing to 7 to 8 hours of sleep per night lowers anxiety and increases clarity. You are more likely to make better food choices and have the energy to exercise and less likely to feel triggered by the side effects of treatment. If you are having trouble sleeping, seek advice from your doctor.

• Many people close to you will want to support you, but they may not know how. Express your needs and accept offers of help. This will allow you to get the help you need. This includes help with cooking meals, cleaning, shopping or getting a lift to your medical appointments.

• Say no to things you really don’t feel like doing. You don’t have to please others all the time.

• Keep up some social activity if you can. Meet regularly with a close friend for a chat over coffee/lunch or plan an outing you both enjoy, like seeing a movie/play, visiting a museum or a walk in nature. It may help distract you from your worries, even if only for a short time.

• Keep a journal of your highs and lows during treatment – it can be a very useful way of dealing with feelings that seem overwhelming.

• Think about doing activities you have previously enjoyed or pick up a new hobby, which may also give you an outlet for your emotions. For example, think about writing, music, yoga, cooking, woodwork, dancing, watching Netflix, shopping, creating Pinterest boards, listening to your favourite podcasts or walking in nature.

Moderate daily exercise has been shown to reduce fatigue and increase physical, mental and emotional energy. Consult your doctor before starting any new exercise regimes. They may suggest a referral to a physiotherapist or exercise physiologist who can assess your fitness level and help plan an exercise program specific to your needs. This may help to improve health or maintain good health, especially for people who have been unwell.

IF THINGS GET REALLY TOUGH ...

There may be times you feel overwhelmed, which is very normal. Over time, and with the love and support of those close to you, these intense feelings of distress usually ease.

However, if the feelings continue and you are feeling anxious, sad or emotionally numb most of the time, or having suicidal thoughts, you may be suffering from depression or anxiety. Sadness and depression are different. Please talk to your doctor or cancer nurse. There are many effective treatments and help for people suffering with depression and anxiety. (See Chapter 3: Staying well.)

DON’T DELAY IN ASKING FOR HELP

Ask your healthcare team what support is available. Many hospitals provide access to mental health or other health professionals who can give you support. Ovarian Cancer Australia’s Information and Referral Line can refer you to specialised counselling services.

Beyond Blue can also provide information and support to help anyone in Australia achieve their best possible mental health.

If you need urgent help at any time of the day or night, call the Lifeline 24-hour telephone counselling service on 13 11 14.

When you or someone you love has been given a cancer diagnosis, you are likely to have many questions. What is it, what caused it, why wasn’t it discovered sooner, what does this mean for the future?

The next few pages will hopefully answer your most urgent questions.

WHAT IS CANCER?

Our body is constantly making new cells to allow us to grow and replace old or injured cells. These cells usually grow in a predictable and organised way. But sometimes cells behave and grow abnormally and form a growth or lump called a ‘tumour’. There are many different types of cancer, but they all begin with this uncontrolled growth of abnormal cells.

A tumour can be benign or malignant. Benign tumours are not cancerous and do not spread from where they began. Malignant tumours are cancerous and can spread into nearby tissue. Cancer cells can sometimes spread from where the cancer started in the body (primary cancer) and travel through the blood or lymphatic system to other parts of the body. When this happens the cancer that develops in another part of the body is called a ‘secondary cancer’ (or ‘metastasis’).

I just remember hearing the word ‘cancer’, and then I went numb. It was as though everything stopped as my mind struggled to process what I had just heard. This can’t be happening.

WHAT ARE THE OVARIES?

The ovaries are 2 small (about 2 to 4 cm) almond-shaped organs that are part of the female reproductive system. They sit on either side of the uterus (womb). Other parts of the female reproductive system include the fallopian tubes, cervix and vagina.

Each ovary contains germ cells that eventually develop into eggs (ova). In people who are having periods, a mature egg is released by the ovary each month (this is called ‘ovulation’). Your ovaries also produce the hormones oestrogen and progesterone, which regulate your menstrual cycle and affect the development of female body characteristics – such as breasts, body hair and body shape.

WHAT IS OVARIAN CANCER?

Ovarian cancer is a general term used to describe a cancerous (malignant) tumour starting in one or both ovaries. The ovaries are made up of 3 main kinds of cells – epithelial cells, stromal cells and germ cells. Each of these cells can develop into a different type of tumour.

The average age of people when they are diagnosed with ovarian cancer is age 64. While many are diagnosed over the age of 50, ovarian cancer impacts people of all ages. This Resilience Kit contains information for everyone.

Ovarian cancer is the ninth most common cancer in Australia. It is estimated that 1815 Australians will be diagnosed with ovarian cancer each year. You can read more about statistics and outlook for ovarian cancer in Chapter 2: Treatment.

TYPES OF OVARIAN CANCER

The ovaries are made up of 3 main kinds of cells – epithelial cells, stromal cells and germ cells. Each of these cells can develop into a different type of tumour.

Epithelial ovarian cancer

This is cancer that starts in the cells lining the surface layer (epithelium) of the ovary. It is the most common type of ovarian cancer, accounting for 9 out of 10 cases. It most often affects women over 50; the average age of diagnosis is the early 60s.

There are several subtypes of epithelial ovarian cancers, which include:

• high-grade serous (the most common type)

• endometrioid

• low-grade serous

• mucinous

• clear cell

• undifferentiated or unclassifiable.

High-grade serous ovarian cancers

This is the most common type of epithelial ovarian cancer, and it is an aggressive type (fast growing) Diagnosis is usually made in the advanced stages of the disease (stage 3 or
4 – see the section in Chapter 2: Treatment titled ‘Staging and grading your cancer’). To begin with, the cancer grows slowly in the fallopian tubes but once it reaches the ovaries it spreads very quickly to surrounding tissues, lymph nodes and organs, as well as other more distant parts of the body (lungs, liver, bones).

This cancer is usually treated with surgery and/or chemotherapy and sometimes targeted therapies.

Endometrioid ovarian cancer

This is the second most common type of epithelial ovarian cancer. It often presents in younger women and in an earlier stage of disease than high-grade serous ovarian cancer. Endometrioid ovarian cancer can occur alongside endometrial cancer and is associated with endometriosis and Lynch syndrome.

Surgery is the most common type of treatment, sometimes followed by chemotherapy, depending on the stage of the tumour.

Low-grade serous ovarian cancers

These are a type of epithelial ovarian cancer. They typically occur in younger women but can also start in older women, and they are usually hormone receptor positive. ‘Hormone receptor positive’ describes cells that have proteins that attach to a specific hormone. For example, some ovarian cancer cells have receptors for the hormone oestrogen, so they are hormone receptor positive, and need oestrogen to grow.

Low-grade serous ovarian cancers are aggressive and grow slowly on the surface of cells. They represent about 10% of epithelial ovarian cancers. Surgery is the most common type of treatment for these types of cancers. Chemotherapy, targeted therapies and hormone inhibitors are often used after surgery to help reduce the risk of the cancer coming back. These cancers do not always respond well to chemotherapy.

Mucinous ovarian cancer

This is a rare subtype of ovarian cancer accounting for about 3% of ovarian cancers. This subtype can appear similar to gastrointestinal cancers and is most common in people under 40 years. They tend to be large tumours, which means they are often found before they have spread, although they are not always initially easy to diagnose.

Mucinous tumours are distinct from other types of epithelial cancers. They do not respond well to platinum-based chemotherapy.

As well as cancerous (malignant) tumours, mucinous tumours can be non-cancerous (benign) or borderline.

Clear cell ovarian cancer

This is a subtype of epithelial ovarian cancer usually diagnosed in its early stages. It is a higher-grade tumour, meaning it grows and spreads more quickly. Clear cell ovarian cancers account for approximately 10% of epithelial ovarian cancers in Australia, with higher rates in other countries.

Endometriosis increases the risk of developing clear cell ovarian cancer.

Treatment is similar to other ovarian cancer (surgery and chemotherapy). Clear cell ovarian cancer doesn’t usually respond as well to platinum-based chemotherapy as other epithelial ovarian cancers. Resistance to chemotherapy may develop earlier.

If you have been diagnosed with this cancer, discuss treatment options with your doctors as you may have access to ongoing clinical trials.

Cancers related to epithelial ovarian cancer

Other cancers related to ovarian cancer – primary peritoneal and fallopian tube cancer – have similar symptoms and treatment.

Primary peritoneal cancer

Primary peritoneal cancer is a rare cancer of the cells that line the inside of the abdomen (peritoneum), which are similar to epithelial cells. Because of its location, it is possible to develop primary peritoneal cancer even if you have had your ovaries and fallopian tubes removed. Primary peritoneal cancer is always diagnosed in the later stages (stage 3 or 4).

Primary peritoneal cancer is a relatively rare cancer that develops in a very similar way to epithelial ovarian cancer. People diagnosed with this type of cancer should also be offered genetic testing.

Fallopian tube cancer

The fallopian tubes link the ovaries to the uterus. Cancer can start in these tubes and spread to the ovary. Cancer beginning in a fallopian tube is sometimes called ‘fallopian tube cancer’.

Fallopian tube cancer is similar to ovarian cancer. Both cancers are staged and treated in the same way.

Although it has been a rare cancer, it is now thought that many ovarian cancers actually start in the fallopian tube.

IMPORTANT FACTS TO REMEMBER

• High-grade serous cancer, fallopian tube cancer and primary peritoneal cancer are names that may be used interchangeably.

• Treatment for all these types is the same or very similar.

• The information in this resource and other resources from Ovarian Cancer Australia applies to all of these diagnoses.

Non-epithelial ovarian cancer subtypes

There are several other subtypes of ovarian cancer including:

• germ cell ovarian cancer

• sex cord stromal tumours

• borderline ovarian tumours

• undifferentiated or unclassifiable.

Germ cell ovarian cancer

Germ cell ovarian cancer occurs when abnormal cells form in the cells in the ovary that eventually develop into eggs. This type of ovarian cancer is rare and accounts for approximately 4% of ovarian cancers. Germ cell tumours affect mainly teenagers and people in their 20s.

Germ cell ovarian cancer usually only develops in one ovary. There are 3 main subtypes:

• dysgerminomas

• immature teratomas

• yolk sac tumours.

Germ cell tumours also include choriocarcinoma and embryonal carcinoma.

Symptoms can include:

• abdominal/pelvic pain, discomfort

• bloating/distention of the tummy

• a lump which can be felt when touched (palpable ovarian mass)

• twisting of the ovarian tissue causing pain (ovarian torsion)

• changes to the menstrual cycle (increased or decreased bleeding)

• vaginal bleeding in post-menopausal women.

The causes of germ cell ovarian cancer aren’t well known. No genetic variants are currently associated with germ cell ovarian cancer.

Treatment often begins with surgery (sparing fertility where possible) followed by chemotherapy if required. Because germ cell tumours are typically fast growing, they tend to respond well to chemotherapy and are curable in most people.

Sex cord stromal cancers

These are rare cancers of the ovary, with granulosa cell tumours being the most common type. Other types include fibromas and Sertoli-Leydig tumours.

Only about 5% of ovarian cancers are sex cord tumours. They are often found in the early stages. Treatment depends on your age, cancer stage and type of tumour. Surgery is the main treatment. Some people also have chemotherapy.

Some hereditary conditions are associated with sex cord stromal tumours. Research will hopefully give us a better understanding of the possible gene mutations involved, as well as a more personalised approach to treatment.

Small cell ovarian cancer

This is a rare type of ovarian cancer. It usually occurs in younger people.

Hypercalcaemic tumours make up most of these tumours, with pulmonary and neuro-endocrine small cell ovarian cancers making up the other types.

Symptoms are vague and similar to other ovarian cancers. Treatment guidelines are being developed. Treatment mainly involves surgery followed by chemotherapy.

Borderline ovarian tumours

Borderline ovarian tumours are abnormal cells arising in the tissue covering the ovary. These are not usually considered to be cancerous but have the ability to spread through the abdominal cavity if they are on the surface of the ovary. They can turn into a cancer, but this is rare (<1%).

Borderline ovarian tumours usually affect women aged between 20 and 40, and surgery alone is usually curative (there is a risk of recurrence if they have already spread from the ovary at diagnosis, or if the ovary involved is not completely removed). Fertility-sparing surgery is usually appropriate for women wishing to retain fertility, and long- term surveillance is required.

We don’t know the exact causes of most ovarian cancers. Some factors may increase a person’s risk of developing ovarian cancer.

INCREASING AGE

Getting older is the biggest risk factor for developing ovarian cancer. Ovarian cancer can happen at any age, but usually in people who have been through menopause, with the average age of diagnosis being 64.

HEREDITARY FACTORS

Hereditary cancer is cancer that runs in families. Having a strong family history of ovarian, breast or some other cancers, especially endometrial or colorectal cancer, may put people at an increased risk of ovarian cancer.

About 20% of all ovarian cancers are caused by inheriting a variant in a gene such as BRCA1 or BRCA2 from one of your biological parents. People of Ashkenazi Jewish descent are more likely to carry BRCA variants than the general population.

Detailed information about family history and inherited risk is found later in this chapter.

Other factors that may increase the risk of some types of ovarian cancer include:

• having endometriosis

• a previous breast cancer diagnosis

• diabetes

• use of hormone replacement therapy

• being overweight

• smoking

• not having had children (a slightly higher risk).

It is important to know that many people who develop ovarian cancer do not have these risk factors, and many with some or all of these risk factors do not develop ovarian cancer.

PROTECTIVE FACTORS

There are also protective factors against ovarian cancer including:

• surgical removal of the ovaries and fallopian tubes

• having children

• having used oral contraceptives.

Although these factors reduce the risk of ovarian cancer, people can still develop ovarian cancer (including primary peritoneal cancer after removal of the ovaries and tubes).

The symptoms of ovarian cancer can be vague. They can come on very slowly or rapidly.

Possible symptoms may include:

• pain in the lower abdomen or pelvic area

• bloating and a full feeling in the tummy (abdomen)

• having the feeling of needing to pass urine more urgently and more frequently

• loss of appetite.

In addition, the following less common symptoms may be present:

• vaginal bleeding after menopause

• irregular periods or bleeding outside of regular menstruation before menopause

• painful sex

• back pain

• constipation

• swollen abdomen due to a build-up of fluid in the abdomen (ascites)

• feeling or being sick (nausea or vomiting)

• extreme tiredness/fatigue

• breathing problems – shortness of breath

• abdominal swelling

• weight loss or gain.

All the symptoms discussed in this section can be caused by other, less serious medical conditions. However, if you have any of them, we strongly advise you to see your GP, particularly if the symptoms are persistent and troublesome.

They will be able to examine you and, if necessary, do further tests to find the cause. If you have any abnormal test results and/ or your GP has concerns, they should refer you to a specialist gynaecological oncologist.

SCREENING FOR OVARIAN CANCER

Screening means testing healthy people to find a disease in its early stages. People being screened usually have no signs of the disease. For cancer screening to be effective there must be an accurate test that can pick up early-stage cancer when treatment is more likely to cure the cancer. It is important the test does not give a positive result in people who do not have cancer (known as a ‘false positive’).

Population screening is also very hard because, even with an almost perfect test, there will be many more false positives than true positives, and this comes at a cost to women.

The National Action Plan sets out a roadmap to reduce the incidence, increase the survival rate and improve the quality of life of people diagnosed with ovarian cancer in Australia. It was developed over many months in partnership with people living with ovarian cancer, key organisations, and leaders in ovarian cancer including researchers, policy makers and ovarian cancer health professionals. You can download a copy of this plan from our website at ovariancancer.net.au.

At present there is no reliable population screening test for early ovarian cancer, nor is there any recommended screening for women at increased risk due to an inherited genetic predisposition. Research is underway to develop tests to detect ovarian cancer at earlier stages and improve patient outcomes.

The following tests can help to diagnose ovarian cancer, but are not effective as population screening tests:

• CA125 blood test

• transvaginal ultrasound.

A recent study found that even if ovarian cancer was detected earlier using the current available investigative screening tools, it didn’t change the overall outcomes.

CA125 and transvaginal ultrasound tests are unreliable screening tests for ovarian cancer. They would result in too many cancers being missed and too many people being incorrectly diagnosed and having unnecessary (and often invasive) procedures.

They are useful to help with diagnosis in someone who is having symptoms.

CA125 BLOOD TEST

CA125 is a protein in the blood that is present in everyone. The level of CA125 can rise due to several factors, including cancer. For this reason, CA125 is called a ‘tumour marker’. A tumour marker is a chemical made by cancer cells that circulates in the blood of a person with cancer.

The level of CA125 increases in about 50% of people with early-stage ovarian cancer and 80% of people with an advanced stage of ovarian cancer. However, CA125 can also rise due to other, non-cancerous conditions, including menopause, irritable bowel syndrome, ovarian cysts, menstruation, fibroids and endometriosis.

TRANSVAGINAL ULTRASOUND

This examination is done by inserting an ultrasound probe into the vagina. It is not completely accurate in diagnosing ovarian cancer: it is not always easy to tell the difference between a harmless cyst on the ovaries and a malignant tumour.

Your GP is usually the first person you go to if you have symptoms. They will examine you, ask about your symptoms and possibly order a CA125 blood test and an ultrasound. They may also want to do an internal vaginal examination to see if your uterus and ovaries feel normal. If you prefer, you can ask for a female doctor to do this. It is your choice: do not be afraid to ask.

ULTRASOUND

An ultrasound creates a picture of your internal organs (ovaries and uterus) on a computer by using echoes from soundwaves. This test is done by a sonographer. It can be done in 2 ways.

• With an abdominal ultrasound, you will lie on an examination table and the sonographer will move the ultrasound device (transducer) over your abdomen.

• With a transvaginal ultrasound, you will lie on an examination table and the sonographer will insert the transducer (smooth handheld device) covered in gel into your vagina. It should not be painful, but it can feel uncomfortable. This is the best way to do the ultrasound as it gives a clearer picture. If you have concerns about it being done this way, talk to your specialist.

If the ultrasound and other tests suggest you have cancer, your GP will refer you to a specialist in women’s health and cancer (a gynaecological oncologist). You should be seen within 2 weeks. The specialist will do a physical examination and take a detailed health history. They will also ask you about your family history of cancer. They will most likely also order further tests.

This will be to work out:

• how far the cancer has grown

• if the cancer has spread to other parts of your body

• which treatment is best for you.

The results of these tests will help your doctor to confirm your diagnosis and the stage of your cancer. (See ‘Staging and grading your cancer’ in Chapter 2: Treatment.)

Further tests may include the following.

• Computerised tomography (CT) scan: This gives a 3-dimensional (3D) image of your organs. It will help find out if the cancer has spread. It may not identify all ovarian tumours.

• Biopsy: Under anaesthetic, a needle will be inserted into the tumour. A small sample of tissue (biopsy) will be taken and tested to help confirm a cancer diagnosis.

• Chest x-ray: This can check if a cancer has spread to the lungs.

• Removal of fluid from your abdomen: This is sometimes done if there is a build-up of fluid in the abdomen (ascites). The fluid is tested in the laboratory for cancer cells. See Chapter 2: Treatment for more information.

• Laparoscopy: This is a small operation done under a general anaesthetic. A small cut will be made in your abdomen and a thin fibreoptic tube with a small camera on the end (laparoscope) inserted. This enables tissue samples to be removed for testing in the laboratory.

• Laparotomy: This operation will be offered if a laparoscopy is not suitable for you. If cancer is found, the surgeon may continue with the operation to remove the cancer. This would only happen if you had consented to this possibility before the laparotomy.

If you need further tests, your doctor will discuss them in more detail with you.

Your doctor may also recommend that you have other scans such as computed tomography (CT), magnetic resonance imaging (MRI) or positron emission tomography (PET).

WAITING FOR RESULTS

Waiting for test results is usually a stressful time. You and those close to you are likely to feel very nervous and worry about what your results may mean for your future. It is only natural to think the worst.

Some tests will come back within a day or two, but others can take much longer: up to a week or more. The waiting can feel like an eternity. Finding out from your doctors and nurses exactly how long it will take to get each result back as well as how they will relay this information to you (e.g. phone call or clinic appointment) might help control your anxiety and stop you waking each day wondering if ‘today will be the day’.

During the waiting time you may find it helps to speak with your cancer nurse at the hospital and close friends and family. You can also call the Ovarian Cancer Australia support team on 1300 660 334 during business hours and speak with one of our team.

YOUR HEALTHCARE TEAM

Many people with ovarian cancer suggest that learning more about their cancer and its treatment is empowering. It helps you to know what to expect, may relieve some of your anxiety and may help you to make informed decisions about your healthcare and treatment. Feeling in control makes it easier to cope.

Your healthcare team will give you essential information about the type, stage and grade of the ovarian cancer and the treatment most suitable for your type of cancer.

Many people say it can be difficult to take everything in and remember it when they are at medical appointments. You may be nervous and unable to fully understand the ‘medical language’ your doctor is speaking.

PRACTICAL TIPS

• Take a friend or relative along with you to medical appointments – especially the first few. Your companion can give you support as well as remembering information. They may take notes for later reference.

• Ask your doctor if you can record your discussions (most are happy for you to do this) to play back later. Many mobile phones have a voice recording function.

• Use a diary, notebook or notes app in your mobile phone to write down questions to ask your medical team at each visit and to record the answers.

• Ask your doctor for more information on anything unclear. If they use terms you don’t understand, ask them to explain them. Also see the list of ‘Helpful terms’ in the Glossary.

• Ask your doctor to give you a written summary of your treatment plan.

And remember, there is no such thing as a silly question – ever!

ONLINE

The internet has an enormous amount of information
about ovarian cancer and possible support services. Online information is not a substitute for information from your doctor or other members of your healthcare team. Not all information you find online is accurate or will be right for you. While there are some very good websites, some sites provide wrong or biased information.

Discuss information you find with your doctor. Bookmark or print out anything of interest and take it to your doctor’s appointment as a starting point for discussion.

Focus on websites from reputable organisations such as major cancer and ovarian cancer organisations, hospitals and universities. You will find plenty of these sites throughout this kit and on the Ovarian Cancer Australia website (ovariancancer.net.au).

It’s a good idea to check the author of articles, their qualifications and when the information was last updated. If the site isn’t from a well-known organisation, find out who is providing the information and why (are they selling a product or service, for example?).

When you are unwell it can be overwhelming to try and sort through information. But you could ask a family member or friend to help if you are feeling unable to do this, which will give them something helpful to do for you.

A WORD OF CAUTION

Be wary about asking ‘Dr Google’, as a lot of medical and cancer information on the internet has not been reviewed by experts. Some of it is wrong and can be dangerous to follow.

GO AT YOUR OWN PACE

Each person will want different levels of information: some may want to find out everything they can and read extensively; others may find the amount of information available overwhelming. Not everyone will find the same resources useful. At different times in your journey, you will need different information.

Ovarian cancer is more common in older people, with most cancers affecting women over age 50. This can mean younger people with ovarian cancer feel isolated. They may feel their specific needs and concerns are not being addressed.

As a younger person you may be particularly concerned about:

• your ability to have children after treatment

• early menopause as a result of your treatment

• explaining your cancer to and caring for younger children

• work, study and finances.
  

HAVING CHILDREN AFTER TREATMENT

Some cancer treatments can affect a person’s ability to have a child (fertility). If you wish to have children now or think you might in the future, it is very important to talk to your team of specialists before your treatment begins. Options for preserving your fertility may include:

• surgery to protect your ovaries from treatments

• fertility-sparing surgery

• embryo banking/freezing

• egg banking/freezing

• ovarian tissue banking/freezing.

Not all options will be suitable for all people.

Several factors will affect your choices for fertility preservation before and after treatment for ovarian cancer. These include:

• your age

• the stage of your cancer

• the type of treatment planned

• your cultural and religious beliefs.

Talk to your specialist about your own situation. They may refer you to a fertility specialist to discuss the options further.

If you have germ cell ovarian cancer (which mainly affects younger people), early epithelial ovarian cancer or a borderline tumour, you may be able to have fertility-sparing surgery, which may mean you can become pregnant in the future.

Chemotherapy can also affect your fertility. If you need to have chemotherapy after fertility-sparing surgery, your doctor may recommend a treatment that rests your remaining ovary. This aims to protect it from the toxic effects of chemotherapy.

There have been many advances in fertility treatments. Your options will depend on your own situation. Sometimes there is the possibility for ovarian stimulation and egg freezing/ embryo freezing. Ovarian tissue freezing may be an option. With tissue freezing, it is extremely unlikely the tissue could then be grafted back due to the risk of transmitting cancer cells. However, there are developing techniques that may allow eggs to be extracted and developed outside the body.

You may also want to speak with your specialist about other options for having children, such as adoption and surrogacy.

Francine's Story

Being diagnosed with ovarian cancer at the age of 31 and without having kids (but planning to) was extremely upsetting. I suddenly felt my choices to have (or not to have) children had been taken away from me. This felt like a punishment for focusing on my career until that point.

Luckily the fertility clinic at the hospital where I was being treated offered to freeze my ovarian tissue. The hope is I will eventually be able to have a family through surrogacy. We know it won’t be easy but I feel I was given an option again.

If you have more-advanced epithelial ovarian cancer, your treatment will most likely involve removal of both your ovaries and your uterus. You will not then be able to become pregnant. Learning you will lose your fertility can be devastating; many people say it is as difficult as the cancer diagnosis to come to terms with – or even more difficult. However, there are options to help you have a family safely, for example, with donor eggs and surrogacy. So, it is important you talk to a fertility specialist about your options.

Whether you were planning to have children, have already had children or haven’t yet thought about it, the prospect of cancer treatment affecting your fertility may make you feel disempowered.

You may have an overwhelming sense of loss and feel angry and cheated. Talking about your feelings and getting some emotional support can help you deal with any loss.

Please talk to your doctor or another member of your healthcare team to access the support you need.

EARLY MENOPAUSE AFTER TREATMENT

If you have your ovaries and uterus removed, you will have an ‘immediate’ or ‘surgical’ menopause. Instead of the gradual transition that usually happens with age, you may get sudden symptoms. This can be a shock and adjusting emotionally can take time. There are effective treatments and health professionals to help you cope with surgical menopause.

Chapter 2: Treatment includes information on early menopause after treatment and what to expect, helpful ideas for managing the short-term and long-term effects, and who to contact for more information and support.

TALKING TO AND CARING FOR YOUNGER CHILDREN

If you have younger children, you may worry about how to tell them about your cancer. You may also have concerns about how you will look after your children during and after treatment. Read ‘Talking to children about cancer’ in Chapter 3: Staying well for practical tips and a list of resources to help you support children of all ages.

Chapter 4: Support offers many practical support services to help you with everything from house cleaning to childcare. Make the most of all help offered. It will allow you to focus on healing and being with your children.

WORK, STUDY AND MONEY

Being diagnosed with cancer at a younger age may have a significant impact on your career, study and your financial situation. This can be extremely stressful. Chapter 4: Support discusses practical issues, including services that can provide financial support and managing your return to work or study.

In a matter of weeks, I went from being fully active and independent, to being bedridden in hospital, feeling like I had no control over my life anymore. My super-organised and meticulously planned-out life was suddenly plagued with uncertainty.

FEELING OVERWHELMED?

Speak to a support team member at Ovarian Cancer Australia on 1300 660 334 or email support@ovariancancer.net.au

Visit ovariancancer.net.au for access to our webinar library, and to join an online forum to connect with women and hear their stories.

Most people diagnosed with ovarian cancer do not have a history of ovarian cancer in their family. However, some people’s family history can increase their risk, as in the following situations.

• There is a strong family history, meaning 2 or more close relatives on the same side of the family (father’s or mother’s relatives) have, or have had, ovarian, breast, colon or endometrial cancer. Generally, the more relatives from the same side of the family who have had these cancers, the greater the risk, especially if any were diagnosed before they were 50.

• A family member has had genetic testing confirming they have a hereditary gene variant that increases cancer risk.

• A person has Ashkenazi Jewish ancestry (who have a higher incidence of BRCA mutations than the general population).

• A person’s cancer was diagnosed at an early age, or you have had more than one type of cancer.

  Someone may have a family history just by chance, or it may be because there is a gene variant running in the family that increases the risk of developing cancer.

INHERITING AN OVARIAN CANCER GENE

Although most ovarian cancers are not hereditary, about 20% of epithelial ovarian cancers are caused by a gene variant that has been passed on from a biological parent. Ovarian cancer caused by inheriting a gene variant is called ‘hereditary ovarian cancer’.

Hereditary cancer may run in a family because of an inherited gene variant. If you inherit a gene variant that causes hereditary cancer, it means you are at greater risk of developing the types of cancer linked to that gene. The type of cancer that develops is specific to the gene involved – such as breast cancer in a person who has inherited a BRCA1 gene variant. People who carry a gene variant have most often inherited it from one of their parents and have a 50% chance of passing it on to each of their children. However, it is still possible to inherit a gene variant without having a family history of these cancers.

Finding out my sister and I both had the BRCA2 gene variant made sense. Finally, there was a reason why both mum and her sister had been diagnosed with and had passed with ovarian cancer. It is more important for us to know and take preventative steps than not to know at all!

While the majority of ovarian cancers are not hereditary, variants in the BRCA1 and BRCA2 genes are responsible for most cases of hereditary ovarian cancer (up to 20% of all ovarian cancers). These gene variants are named for their connection to breast cancer (BReast CAncer genes 1 and 2) but are also associated with ovarian, fallopian tube, prostate, peritoneal, pancreatic and male breast cancer. Although less common, variants in genes other than BRCA1 and BRCA2 can also increase the risk of developing ovarian cancer.

Most people with clear cell ovarian cancers don’t have a family history of ovarian cancer, and rarely have BRCA1 or BRCA2 gene variants. However, Lynch syndrome ovarian cancers are commonly either clear cell or endometrioid subtypes.

Other known genetic factors that increase your risk of developing ovarian cancer are inheriting a gene variant in the:

• mismatch repair genes (Lynch syndrome)

• RAD51C, RAD51D, BRIP1 and PALB2 genes.

There are also other rare genetic links to ovarian cancer, and ongoing research may uncover genetic links not currently known. Inheriting one of these gene variants increases a person’s risk of developing ovarian cancer but doesn’t mean that they will definitely develop ovarian cancer.

GENETIC TESTING FOR OVARIAN CANCER

For people who have been diagnosed with ovarian cancer, genetic testing may find a genetic variant that caused their cancer. This can be important for their treatment choices.

Finding a pathogenic (disease-causing) gene variant in a family means that other people in the family (blood relatives) can also have testing. This can help to clarify their risks, and their options to reduce their risks, of ovarian and other cancers.

Current guidelines recommend that most people diagnosed with ovarian cancer should be offered genetic testing. In Australia, this might depend on factors like:

• the type of ovarian cancer that you have

• having had breast and/or ovarian cancer yourself

• having a family history of breast and/or ovarian cancer

• your ancestry or ethnic background

• if a pathogenic gene variant has already been found in the family.

GERMLINE/HEREDITARY GENETIC TESTING

Germline genetic testing is when a blood or saliva sample is tested for gene variants that run in families. If a person inherits a gene variant from one of their parents, they will have that variant in all the cells in their body. Finding a pathogenic (disease-causing) gene variant means that other people in the family (blood relatives) should also have testing. This can help clarify their risk of ovarian and other cancer, as well as their options to reduce their risk. Inherited genetic variants that cause cancer are rare.

SOMATIC GENETIC TESTING

Most cancers happen because of genetic changes that occur as a tumour develops. These changes are called ‘somatic variants’. They start in a single cell and do not run in families. Somatic testing is usually done on tumour tissue and looks for these types of changes. Understanding somatic changes can help to explain how a cancer started, or how it is behaving. This can be important for treatment choices. Sometimes, somatic testing can find a variant in a tumour that may be hereditary, but most are not.

WILL I HAVE TO PAY FOR GENETIC TESTING?

It’s normal to be concerned about the cost of genetic counselling and testing.

Medicare funds some genetic testing for people with breast or ovarian cancer who have a high probability of having a gene variant. The test is also funded for relevant family members
of people who have a gene variant. Genetic testing for other gene variants may not be covered by Medicare. Your specialist doctor can request some Medicare funded tests or may refer you to a genetic service.

INSURANCE AND GENETIC TESTING

Some people are concerned about the impact genetic test results will have on their current or future insurance policies. Genetic testing does not affect any insurance policies you already have in place, but it may affect new applications or changes to insurance policies.

Genetic testing does not affect your eligibility for private health insurance in Australia. However, if you have been diagnosed with ovarian cancer, your ability to take out some new insurance policies may still be affected. You will need to discuss this with the insurance company.

For information on how genetic testing may impact your treatment, see Chapter 2: Treatment, section titled ‘Personalised medicine and targeted treatments’.

I found out I had the BRCA1 gene and so did one of my daughters – she carried both gene variants. She had surgery and is thinking about having a double mastectomy. It has affected her a lot mentally and she has suffered a lot of anxiety since.

This chapter introduces the people who are part of your treatment team, the various treatments for ovarian cancer, tips on managing side effects and other aspects of treatment.

Every person with ovarian cancer will have an individual treatment plan. Your plan will depend on the type and stage of ovarian cancer you have and your general health. It may include other personal factors such as whether you want to have children in the future.

For most people, treatment for ovarian cancer (including fallopian tube or primary peritoneal cancer) involves a combination of surgery and chemotherapy. The most important factor of your treatment is that you are cared for by the right team of specialised health professionals.

The doctor and patient relationship are so important. I found it the single most important thing when I was diagnosed and still do 8 years later. I still stay in touch with my surgeon and chemotherapy doctor.

YOUR HEALTHCARE TEAM

We strongly recommend that your surgery is performed by a gynaecological oncologist. It is also ideal if your care is coordinated by a multidisciplinary team. This is a group of healthcare professionals who meet to consult about the same patient; each team member specialises in a different area of care and the care is coordinated between members of the team.

Multidisciplinary teams within a gynaecological cancer centre provide people with ovarian cancer the best possible care available. You should have a point of contact for the team. This may be your specialist oncologist, surgeon or specialist nurse.

If it is not possible for your care to be provided by a gynaecological cancer centre (especially if you live in a rural or regional area), ask your GP or specialist for referrals to other health professionals (such as dietitians, occupational therapists), so that you receive a full range of care. You may need to access visiting health professionals or access advice through linked phone and internet services. Many rural centres also have links to the centralised multidisciplinary meetings.

Ovarian cancer is sometimes diagnosed unexpectedly during surgery; in such cases the surgeon did not expect to find cancer or may have expected to find a different problem. If a general surgeon or gynaecologist performed the surgery, it is important that you next see a gynaecological oncologist to discuss the best options for further treatment.

MEET THE MEMBERS OF YOUR HEALTHCARE TEAM

Your healthcare team will be made up of several different doctors and other healthcare professionals. You will be introduced to each of them over time.

As your needs change, so may the members of your team and the leader of your team. These health professionals will cover all aspects of your care from diagnosis through treatment to follow-up care and beyond (refer to Table 1).

Health professionals who care for people with ovarian cancer

Feeling comfortable with and being able to trust your medical team is imperative. After the initial shock of diagnosis, you want to know that you are getting the best and most up-to-date medical treatment.

YOUR OVARIAN CANCER SUPPORT NURSE

Another important healthcare professional you may like to access during your treatment and care is one of Ovarian Cancer Australia’s Support Nurses.

The Teal Support Program is a free telehealth outreach program supporting people with ovarian cancer throughout their diagnosis, treatment and beyond. The main aim of the program is providing continuity of care when you are not regularly seeing your treating team and focusing on areas of care where there are unmet needs.

Your Support Nurse will liaise with your treating medical team as needed so that everyone is working together to give you the best possible care. The Teal Support Program is the embodiment of our vision that no person with ovarian cancer walks alone.

Whatever the stage of your cancer, your multidisciplinary team of expert doctors and nurses will discuss which treatment is best for you.

The type of treatment you have will depend on:

• the type of ovarian cancer you have

• the size of the tumour and how far it has spread (the stage of the cancer)

• how aggressive your cancer is (how quickly cancer can grow and spread)

• your age

• your general health and fitness level.

The 2 main treatments for ovarian cancer are surgery and chemotherapy. Most people with ovarian cancer will need surgery. However, the timing, type and the extent of surgery you need will depend on the stage of your cancer. Surgery alone is sometimes the only treatment needed for very early- stage ovarian cancers.

If your cancer is more advanced, you are likely to be offered chemotherapy as well as surgery. You may have the chemotherapy before the surgery to help shrink the size of the tumour and then further chemotherapy once the surgery is completed. If you have surgery first, you will have chemotherapy afterwards to help reduce the chance of the cancer coming back.

Not everyone will have the same treatment for their ovarian cancer. While initial treatment may be similar, maintenance therapy and access to other drugs will be different from person to person. Your doctor will work out your treatment with your multidisciplinary team based on the stage and grade of your cancer as well as what is best for you.

Your doctors and nurses will discuss your treatment options in detail with you. They will discuss the benefits as well as the possible side effects. Be clear with your doctors about what you want and how you wish your care to progress. Even if you don’t want to know everything, it is still important your doctor has a discussion with you about the extent of your cancer and the possible treatment options and side effects (short term and long term). It is your decision which treatment you go with, but you need the information in order to make an informed decision.

When talking to your doctor about your treatment:

• Don’t be afraid to ask questions – you need to understand all your options.

• Take a list of questions to your appointment so you don’t forget.

• Ask your doctor for copies of your test results or to write down / provide you with written information about your cancer and its treatment.

• Keep a record of how you have been feeling day to day: good and bad (a healthcare diary or calendar) with the symptoms or emotions most worrying to you. Trying to remember everything that has happened each day, week or month is difficult. But taking this along to each appointment can help you and your doctor plan your care and treatment specific to your needs.

• Ask your doctor or pharmacist to make a list of all your medications, dosages, times to take them, and the reason you are taking them. Keep track of your prescriptions and ask your GP or specialist to write new ones before you run out.

• Take someone close to you along to the appointment – that way they can help you remember everything that was said.

Don’t be afraid to speak up and ask questions. This will help build a strong and honest two-way communication channel between you and your doctors / medical team. This can build trust and enable you to feel more empowered to make important decisions about your medical care and overall situation.

CAN I ASK FOR A SECOND OPINION?

You may wish to ask for a second opinion from another gynaecological oncologist or medical oncologist at any time during your diagnosis or treatment. You can ask your GP or a specialist to refer you to another doctor and to send copies of any test results to the second-opinion doctor.

Getting a second opinion can help to clear up questions and concerns and allows you to choose which doctor you would prefer to manage your treatment. Most cancer specialists
are used to their patients asking for a second opinion. They understand the importance of being sure you are getting the best treatment possible for your situation. So do not be afraid to ask. It is your right.

After receiving a second opinion, you may decide you prefer to be treated by your original doctor or the second-opinion doctor – either choice is okay.

TELEHEALTH

Telehealth (also known as e-health) is remote care when the health provider (for example, doctor, nurse, counsellor) and the patient cannot meet face to face. This can be done using phone or video calls using Teams or Zoom.

Telehealth has become very popular since the COVID-19 pandemic and it has enabled patients to remain in close contact with their healthcare providers. Telehealth can improve access to healthcare for people with chronic illness and cancer. And it is becoming a more accepted and frequently used way for patients to communicate with their treatment team, especially if you live a long distance from your cancer centre.

OPTIMAL CARE PATHWAY

The purpose of this Department of Health-supported pathway (cancer.org.au/cancercareguides) is to improve patient outcomes by providing consistent, safe, high-quality and evidence-based practices to all people undergoing treatment.

You can refer to this pathway to learn about the optimum standards of care at each stage of ovarian cancer diagnosis, treatment and follow-up.

While treatment may vary, the expected standards of care should not differ whether treatment is provided in the public or private service.

The stage of your cancer describes how far the cancer has grown and how far it has spread. The main stages of ovarian cancer are numbered from 1 to 4 and each main stage has sub-stages (a, b, c). (You may also see the main stages written with Roman numerals: I, II, III and IV.)

This staging system is used for all ovarian cancers and for primary peritoneal cancer. Primary peritoneal cancers are usually either stage 3 or stage 4. Knowing the stage of your cancer is important because it helps your specialist to decide on the best treatment for you. It also gives a guide to the chances of the cancer coming back.

The tests and scans you have will provide some information for your doctor about the stage: the cancer’s size and whether it has spread to nearby tissue or other parts of your body. But until you have surgery your doctor might not be able to tell you the exact stage of your cancer.

Ovarian cancer tumours are graded as well as staged. They are graded as either high grade or low grade by the pathologist examining the cancer tissue under a microscope. Low-grade tumours are more similar to normal tissue, whereas high-grade tumours are less like normal tissue and may be more likely to spread.

Doctors around the world use a simple 1 to 4 staging system for ovarian cancer. It is called the FIGO system after its authors: the International Federation of Gynaecological Oncologists. Refer to Table 2.

Serous cancers are commonly high grade and the most common type of advanced stage ovarian cancer.

Ovarian cancer is usually diagnosed in its advanced stages (Stages 3 and 4).

Everyone’s experience of ovarian cancer is different. How well your cancer responds to treatment and what this means for you in the longer term will depend on:

• the type of ovarian cancer you have

• the stage at which it was diagnosed

• the grade of the tumour

• your general health and your age.

The number of people living longer after diagnosis of
ovarian cancer is increasing. Most ovarian cancer, even when advanced, responds well to treatment. There is also a lot of ongoing research into ovarian cancer. This brings hope of new and improved treatments for now and in the future.

If your cancer cannot be cured, it may still respond well to treatment, meaning you will have fewer symptoms for a longer period of time.

You may read or hear about statistics on 5-year and 10-year survival rates. These terms do not mean you will only live for 5 or 10 years. It simply tells you the number of people who live 5 years or more after their diagnosis of cancer. However, many people will live well beyond 5 years.

Remember: statistics are general. You are an individual and ‘general’ statistics may not apply to you.

Statistics can be misleading. It’s important just to see where you are today and to keep walking ahead ... doing your best.

No one can tell you exactly how long you’ll live with ovarian cancer. It depends on your own situation and treatment. No two patients are exactly alike. People respond differently to treatment.

Your doctor is the best person to ask about your own outlook (prognosis). They know your situation best and will be able to discuss possible outcomes.

Surgery is the main treatment for ovarian cancer and is used to:

• confirm the diagnosis of ovarian cancer

• work out what type of ovarian cancer it is

• work out the stage and grade of the cancer

• remove as much of the cancer as possible.

The type of operation you have will depend on the stage of your cancer, which may not be known until the surgery begins. This means many people will go into the operation not exactly sure of what is going to be done. This can be worrying. But your surgeon (gynaecological oncologist) will have explained all the possible options to you before your surgery. Ask your surgeon what the surgery will involve and the different options once they know the stage of your cancer.

Your surgeon will also explain the possible risks and side effects of surgery. This may include a discussion about infertility, which can be very difficult for people who still want to have children. If this is the case, ask your doctor to refer you to a fertility specialist. There is information about infertility and ovarian cancer in Chapter 1: Finding out.

If your tumour is a germ cell, sex-cord stromal, borderline or early epithelial ovarian cancer, you may not need extensive surgery and fertility can usually be preserved. To read more about fertility-sparing surgery, see ‘Younger people’ in Chapter 1: Finding out.

BEFORE YOUR SURGERY

Before you have your operation for ovarian cancer, you will have several tests to check that your heart, lungs and kidneys are fit enough to have an anaesthetic and a major operation. You will be seen before your operation and meet the team of people who will do your operation and care for you afterwards (surgeon, nurses and physiotherapist). At this appointment you will sign a consent form for your operation.

You will come into hospital on the day of your operation or possibly the night before. You can ask any further questions you may have. You will have an intravenous cannula inserted into a vein in your arm. This is a small tube that will be used during your operation to give you fluids and drugs.

You will be advised before you arrive at the hospital when you should stop eating and drinking.

WHAT MIGHT HAPPEN DURING SURGERY?

Depending on the stage of your cancer, you may have surgery to remove:

• your 2 ovaries, your fallopian tubes and your uterus including the cervix

• one ovary and fallopian tube

• as much of the cancer as possible (‘debulking’ or cytoreductive surgery).

During surgery, a cut is made from the top of your belly button down to the top of your pubic hair – although the cut may be longer if you need more extensive surgery. This operation is called a ‘laparotomy’. Laparoscopic surgery (also known as ‘keyhole surgery’) is used for cancers in the early stages or to assess the extent of your cancer. Smaller cuts can be made.

Ovaries, fallopian tubes and uterus

Ovarian cancers often spread to the opposite ovary, the fallopian tubes and the uterus. If the cancer has spread to these areas, your surgeon will remove your uterus (total hysterectomy), ovaries and fallopian tubes (bilateral salpingo-oophorectomy).

Omentum

The omentum is a layer of protective fatty tissue covering the abdominal organs. This acts as a sieve where cancer cells can get stuck and grow. A sample of the omentum is always checked for cancer and the omentum is removed if necessary (omentectomy).

Debulking (or cytoreductive surgery)

Surgery for primary peritoneal cancer usually involves removing the ovaries, fallopian tubes, uterus, omentum and, if possible, any tumour that has spread elsewhere. This surgery is known as ‘debulking’. This is used in more-advanced-stage ovarian cancers to reduce the amount of the tumour as much as possible. This means the chemotherapy will be more effective as it has fewer cancer cells to deal with.

Lymph nodes

Lymph nodes in your pelvic area will be checked for cancer and to help work out the cancer stage. These lymph nodes may be removed. Having lymph nodes removed from the pelvic area can cause problems with how well your lymph fluid drains. You could develop lymphoedema, which is discussed later in this chapter in ‘Managing symptoms and side effects’.

Abdomen and bowel

Ovarian cancer can also spread to the lining of your abdomen or to your bowel. Samples of tissue and fluid from these areas are taken and examined by the pathologist. If cancer is found, the surgeon will remove as much as possible.

If your bowel is affected, the surgeon may need to remove part of the bowel and re-join the 2 ends. Very rarely, the surgeon will need to make an opening in your abdomen, called a ‘stoma’, which allows bowel waste to pass directly out of the body. The stoma may be temporary and later reversed. There may be some situations when the stoma is permanent. If you need to have a stoma, a specially trained stomal therapy nurse can show you how to look after the stoma, answer your questions, and provide you with encouragement and support in adjusting to having a stoma.

Diaphragm, spleen or pancreas

Some people will also require surgery to their diaphragm, spleen and pancreas if cancer has spread to these areas. This is considered additional surgery, which can mean a longer recovery and possibly more complications. Your doctor will explain this to you in detail before the surgery.

Tissue samples and results

After your surgery, samples of tissue you have had removed will be examined by a pathologist (also part of your multidisciplinary team). The final results of all testing may take up to a week and these results will help your doctors decide on further treatment. Waiting for these results can be a stressful time: see Chapter 1: Finding out, ‘Waiting for results’.

Residual cancer

Surgery aims to remove all visible cancer cells, but sometimes this isn’t possible. Any cancer remaining after surgery is called ‘residual disease’. Your surgeon will talk to you about any residual disease you may have and recommend treatment, usually chemotherapy.

WAKING UP FROM SURGERY

In most cases, you will be in a recovery ward when you wake up from surgery. The nurses will keep a close eye on you and attend to your pain relief. In some cases, your surgeon may prefer you to wake up in the intensive care unit, particularly if you have had additional surgery. You will have several tubes in place:

• a drip into a vein in your arm will give you necessary fluids and pain relief medicine

• you may have an oxygen mask to help you breathe

• one or 2 tubes in your abdomen will drain away fluid from the operation site

• a catheter in your bladder to drain away urine

• you may have a tube down your nose and into your stomach to remove fluid

• you may have an epidural (into the space around the spinal cord) catheter for administering pain relief

you may also have transversus abdominis plane (TAP) catheters inserted under the skin near your incision that administer local pain relief at the wound site.

These tubes will be removed as your body functions return to normal (eating, drinking and going to the toilet) and your pain is under control – usually after 2 or 3 days.

Pain relief

The operation for ovarian cancer is major surgery and you are likely to have some pain after your operation. Your treatment team will make sure you are getting enough pain relief, so you are as comfortable as possible immediately after your operation, and during your recovery period.

Pain relief medicine may be given through an epidural (an anaesthetic injection that blocks pain in a particular region of the body) or through patient-controlled analgesia (PCA). A PCA allows you to control the pain relief medicine yourself. If you are still having pain, tell your nurse, who will get your doctor to see you about further pain relief. It is important your pain is managed; this will help you recover as quickly as possible.

Read more about pain relief in ‘Managing symptoms and side effects’, later in this chapter.

Eating and drinking

Immediately after surgery you may not be able to eat and drink normally for a few days. The team will let you know when it is ok to start eating and what type of food you can have. You will have fluids through a drip for a while, then gradually you will be able to start to drink and eat again, usually within one to 2 days.

If you are having difficulty resuming normal food intake, a dietitian can help you with changes to the hospital menu and arrange for drinks to help you meet your nutritional needs. It may be necessary to have a nutrition formula directly into a vein (this is called ‘parenteral nutrition’ and is different to an intravenous drip).

Moving around

You will usually be up and out of bed a day or so after your operation. This helps to prevent blood clots, relieve wind in your tummy and begin the healing process. A physiotherapist will usually visit you soon after surgery to help you start moving again. They will also encourage you to do breathing exercises to help prevent you developing any lung infections.

You will have injections into your tummy for a few days after your surgery, which will help stop blood clots. You are likely to be advised to continue with these injections for 2 to 3 weeks after you leave hospital. You will learn how to give these injections to yourself, or a family member or friend may learn how to do it if this is your preference.

You will also receive some stockings to help stop clots developing. These are called ‘anti-embolic’ or ‘TED’ stockings. You may also have calf compression devices (SCUDS) on your lower legs for the first few days after surgery. These massage your legs to help keep the blood circulating while you are in bed.

EXERCISE AND RECOVERY

A physiotherapist will see you while in hospital to work out a plan of gentle exercise to help your recovery.

On the first day after surgery, this will involve simply sitting out of bed and walking with some assistance. Each day, you will be able to walk a little further.

Your physio will explain how to build on this program of gentle walking once you are home. As your body is healing from surgery, the aim is to have an ideal balance between exercise and rest. You can read more about the benefits of exercise in Chapter 3: Staying well.

Your physio will also explain how and when to start doing pelvic floor muscle exercises. These exercises are really important for strengthening the muscles that support the organs in your pelvis and will help to improve your bladder and bowel control after surgery and as a result of menopause.

BEFORE YOUR DISCHARGE

Your healthcare team will talk to you about support services to help you manage when you get home, such as community nursing, home and domiciliary care, and respite services. Refer to Chapter 4: Support.

RECOVERING AND GOING HOME

The length of your stay will depend on your recovery. It is usually about 5 days.

Your body will have gone through a major physical change. You will need to slow down, listen to your body and ask for all the help you need to aid your recovery.

Before you go home, your healthcare team will talk to you about what activities you can do as you recover. They will discuss returning to other work, lifting and doing housework around the house and garden, exercise and driving. You will generally need to avoid housework and lifting anything heavy for about 6 weeks. This means nothing heavier than a full kettle. Your gynaecological oncologist will advise when you will be ready to drive again.

Your doctor will usually advise you to avoid sex for 5 weeks to allow your wounds to heal properly. Many people need more time. Ovarian cancer and its treatment can change the way you feel about your overall sexuality, including relationships and intimacy. Partners may also be concerned about this. For more information, read ‘Intimacy and sexuality’ in Chapter 3: Staying well.

POSSIBLE SIDE EFFECTS AFTER SURGERY

After any operation there are risks of possible problems. Many of these are not serious but some can be. It is important to treat any complications as soon as possible. Your healthcare team will monitor you very closely immediately after surgery for any potential side effects. The main ones they will be watching out for are:

• infections in your wound, bladder or chest

• bleeding from the vagina or your tummy wound

  (haemorrhage)

• bladder or bowel problems (constipation, inability to pass urine)

• blood clots in your pelvis or legs and rarely, your lungs.

These side effects can happen quite soon after your surgery. Tell your nurses or doctors immediately if you are worried about any symptoms. Remember, these side effects are caused by major surgery and not by your cancer.

Longer-term side effects you may have after surgery are:

• swelling in the legs (lymphoedema)

• early menopause

• infertility.

I did laps of the corridor after my surgery, gradually going further every day. Chemotherapy really knocked me, but I still kept walking. I was very tired but got myself down to the beach and I really started to feel better. I found meditation very helpful.

Lymphoedema

Lymphatic fluid usually drains from your legs via lymph nodes in your pelvis. If you had lymph nodes removed from your pelvis during surgery, lymph fluid may not drain properly. This can cause a build-up of fluid and swelling in one or both legs, called ‘lymphoedema’.

Lymphoedema can also be a side effect of radiotherapy and sometimes may be caused by the cancer itself.

Lymphoedema usually develops gradually – sometimes months or even years after you have finished treatment. Lymphoedema can’t be prevented and there isn’t a known cure. But by being aware of the signs of lymphoedema, you can start treatment early to reduce swelling, improve movement and prevent infections. This treatment is called manual lymphatic drainage is usually done by a physiotherapist or lymphoedema therapist.

Signs to be aware of

See your GP or another member of your healthcare team if you notice any of these changes after the initial side effects of your treatment have settled down:

• a feeling of heaviness, tightness or tension in your leg or foot

• swelling in your leg – you may see dents in your skin when

  you take off tight socks or shoes

• aching in your leg or foot

• swelling or aching in your genital area.

Recent research has shown that ankle swelling/tightness can be a very early symptom of leg lymphoedema due to cancer treatment. You may even get ankle swelling before your feet swell up. Be sure to mention this to your GP or cancer nurse if it happens.

Coping

Lymphoedema can affect the way you feel about your body and appearance. You may feel more self-conscious or less attractive even if you cover up the swelling. Be kind to yourself and try to remind yourself it will get easier and there are things that can be done to help.

What can help?

If you develop any signs of lymphoedema, talk to your GP, cancer nurse or physiotherapist, who can provide advice and treatment. Health professionals such as physiotherapists, nurses and lymphoedema therapists specialise in treating lymphoedema.

Treatment may include gentle exercise, elevation, compression, lymphatic drainage and paying special attention to skincare. A few tips to help include:

• Try to eat a healthy diet and exercise when possible, to maintain a healthy weight, which is an important part of managing lymphoedema.

• Avoid sport or activities involving repetitive movements of your limb affected by lymphoedema – this can make it worse. Gentle exercise is important but check with your doctor first.

• If you have a partner, talk to them about how you feel so they understand your concerns. Most loving partners will be caring and want to ease your anxiety.

• If your lymphoedema is affected by your work, you may need to discuss with your employer about how to change your duties to avoid making your lymphoedema worse.

If you were still having periods (menstruating) before your surgery and both ovaries are removed, you will have a surgical menopause. Your body will no longer produce the same levels of oestrogen and progesterone and your periods will stop immediately.

Instead of a gradual transition that usually happens with age, you may experience sudden symptoms. Many people find this a huge shock. It can be hard to adjust emotionally as the symptoms are often intense and difficult to cope with.

If you still have one ovary after surgery, chemotherapy or radiotherapy can also result in menopause.

The drop in oestrogen that happens at menopause can result in symptoms such as hot flushes and vaginal dryness, as well as health risks such as an increased risk of osteoporosis and heart disease.

Seeking information and support as soon as possible can make a big difference to your emotional wellbeing. It will help if you can talk to a member of your healthcare team before your surgery.

After surgery, I was handed a bundle of information on early menopause. I didn’t think there was any rush to read them – surely this was something I could deal with when I got home. However, within 4 or 5 days I started to get hot flushes and feel very cranky. When my surgeon asked me how I was feeling, I burst into tears!

DEALING WITH LOSS AND MOOD CHANGES

For many people, immediate menopause results in feelings of loss and grief: loss of control over your life, loss of choices about having a family, and loss of part of your identity as a person.

As well as this sense of loss, people who go through surgical menopause are at a higher risk of anxiety, depression and mood changes than people who go through menopause naturally. This is probably due to a combination of the very sudden hormonal changes in your body as well as coping with your cancer diagnosis and its treatment.

WHAT CAN HELP?

Many self-help techniques, lifestyle changes and medicines (including hormone replacement therapy (HRT) can help relieve the uncomfortable symptoms and reduce the health risks associated with menopause. Not every person can have HRT after treatment for ovarian cancer. Your GP or a doctor specialising in women’s health can give you more information.

It’s really important to work through your feelings. Talk to your family, friends and members of your healthcare team. Try to relieve your stress in ways you know used to help you. This may involve writing in a journal, drawing, listening to music, walking or doing yoga. All of these can help you express your thoughts and feelings.

Always ask for professional help if your feelings of loss, depression and anxiety continue. Many different treatments can help, including counselling, dietary changes and possible medications.

Read about ‘Sadness, loss and depression’ in Chapter 3: Staying well.

WHEN YOU ARE FEELING WELL ENOUGH

Gentle physical activity may help to ease hot flushes, help you sleep better and increase your overall feelings of wellbeing. Being active also helps to protect against osteoporosis and reduce your risk of heart disease.

INFERTILITY AFTER TREATMENT

Ovarian cancer treatment in people of childbearing age can affect their ability to have children. Talk to your gynaecological oncologist about options for preserving your fertility before your treatment begins.

There is detailed information about possible infertility in younger people in Chapter 1: Finding out.

It’s been difficult to deal with multiple issues simultaneously: the cancer diagnosis, the treatment and its side effects, my fertility options and menopause. When undergoing treatment, learn to say yes to any assistance offered!

Most people with ovarian cancer will need chemotherapy. Chemotherapy is anti-cancer drugs (sometimes called ‘cytotoxics’). The aim of the treatment is to either destroy the cancer cells or slow down or stop the growth of the cells.

WHY AND WHEN IS CHEMOTHERAPY USED FOR OVARIAN CANCER?

If your ovarian cancer has started to grow outside the ovary, research shows that having chemotherapy after surgery can improve your survival and reduce the risk of the cancer coming back. Some women may have chemotherapy before surgery to help shrink the cancer. Your medical oncologist will talk to you about how chemotherapy may benefit your own situation.

If your cancer comes back (recurs) after your initial treatment, your oncologist may suggest using chemotherapy again, possibly with different drugs.

WHAT TYPES OF CHEMOTHERAPY DRUGS ARE USED?

The standard chemotherapy is usually a ‘platinum-based’ drug – carboplatin or cisplatin. The platinum-based treatment is usually combined with another drug called paclitaxel (Taxol). Using 2 different drugs together is called ‘combination chemotherapy’.

Other chemotherapy agents that may be used to treat recurrent ovarian cancer include:

• gemcitabine (Gemzar)

• liposomal doxorubicin (Caelyx)

• topotecan (Hycamtin, Potactasol)

• cyclophosphamide

• etoposide (Vepesid).

Like all treatment, chemotherapy depends on your individual situation. Sometimes only one drug is used. Your oncologist may recommend using a new, more targeted type of chemotherapy if it is suitable for your type and stage of ovarian cancer. Your oncologist may talk to you about a clinical trial using a different type of chemotherapy. Always ask your doctor which chemotherapy drugs they recommend for you and why.

Please note: The drugs listed in this document are correct at the time of publication. There are sometimes changes in the types of drugs and combinations of drugs used to treat cancer.

HOW WILL MY CHEMOTHERAPY BE GIVEN?

Chemotherapy for ovarian cancer is usually given intravenously (IV). This means injecting drugs into a vein. IV chemotherapy may be given directly into a vein with a thin needle and a drip or using a central line.

A central line is much longer tube than a regular cannula and goes into a large vein in the neck or chest and goes all the way up to a vein near the heart.

It can stay in for a few months and can be used for taking blood as well as for receiving your chemotherapy drugs. This means your nurse does not have to find a new vein each time you come for treatment. There are different types of central lines (Port-a-caths, PICC lines and Hickman lines).

IV chemotherapy is usually given in an outpatient or day patient clinic at your treatment hospital. You will be able to sit in a comfortable chair, and, if you choose to, can usually have family or friends with you for company and support. Occasionally, some people may need to stay in hospital for a short time. Some types of chemotherapy are in a tablet form (oral chemotherapy) taken by mouth. Oral chemotherapy can usually be taken at home.

Sometimes, chemotherapy is delivered directly into the abdominal (tummy) cavity – called ‘intraperitoneal (IP) delivery’. IP chemotherapy is not suitable for everyone. Your specialist will discuss this option with you if they feel it is going to be helpful.

If you are having IP chemotherapy, your surgeon will insert a catheter or a port into your abdominal area, and the chemotherapy will be given through this port.

The port is removed as a surgical day procedure when chemotherapy is finished. Those who receive IP chemotherapy also receive IV chemotherapy. IP chemotherapy can have more severe side effects than other types.

Your oncologist or oncology nurse will be able to explain your specific treatment.

CHEMOTHERAPY CYCLES

Each treatment period of chemotherapy is called a ‘cycle’, which includes the actual treatment and a rest period where your body can rebuild healthy cells and regain its strength. You will usually have a blood test before each treatment to make sure your body’s healthy cells have had time to recover.

For ovarian cancer, a treatment cycle varies but is usually every 3 weeks. Your doctor will discuss with you the number of cycles you will have.

I think the first chemotherapy session is the hardest; it’s the unknown and I was really very afraid. But it wasn’t too terrible, it’s a bit like giving blood only rather than donating, you receive fluids.

WILL MY CA125 BE MEASURED DURING TREATMENT?

CA125 is a protein in blood that is also found on most ovarian cancer cells. For many people with ovarian cancer, the CA125 test can indicate the effectiveness of their treatment. If their CA125 level is falling during treatment, it usually means the treatment is working. If the level is rising, it may be a sign the treatment is not effective.

For some people, the CA125 level is a sign of what is happening with their ovarian cancer. In these cases, doctors tend to use the CA125 level at the time of diagnosis as a baseline comparison for what is happening with the cancer during treatment.

For these reasons, the CA125 test can be useful during treatment. But this is not the case for every person with ovarian cancer.

Chapter 3: Staying well includes more information about how the CA125 test may be used as part of your follow-up care.

KEEPING A TREATMENT RECORD

You may like to keep a record of your treatment schedule and what you experience – including side effects and what helped you to cope with them. This will be useful for your next cycle of chemotherapy to remind you what you want to discuss with your oncologist or other members of your treatment team.

SIDE EFFECTS OF CHEMOTHERAPY

As well as destroying cancer cells, chemotherapy can also damage healthy cells in your body. This can cause a range of side effects. Side effects depend on the particular drugs used, but also vary from person to person and from one chemotherapy cycle to the next.

Thankfully, side effects are usually temporary and there are many things you can do to prevent or reduce them. For more information read ‘Managing symptoms and side effects’ at the end of this chapter.

My son documented all of my doctor visits and chemo sessions, so I was able to refer to it during my treatment (as I forgot a lot). I am able to go back now and refer to what has happened, and which doctors said what.

Most people with ovarian cancer have surgery followed by chemotherapy. Some people may also have radiotherapy, but this is rare.

Radiotherapy uses radiation to destroy cancer cells or injure them so they cannot multiply. The radiation used is similar to that used for a general x-ray, and this destroys the cancer cells in the treated area. Although normal cells are also affected by radiation, they are better at repairing themselves than the cancer cells.

Radiotherapy can help remove any cancer cells left after surgery, to reduce the risk of the cancer coming back. It may also be used in advanced ovarian cancer to reduce the size of the cancer and help to relieve symptoms such as pain. If cancer comes back, it may occasionally be in an area that is suitable for radiotherapy – such as a lymph node.

If radiotherapy is suggested, the treatment will be carefully planned with your healthcare team. During one of your first appointments, you will have a CT scan. Your radiation oncologist will use a machine called a ‘simulator’ to work out where your treatment should be directed, so that it destroys the most cancer cells and avoids as much healthy body tissue as possible.

The actual radiotherapy only takes a few minutes. The radiation therapists will help position you on the bed and make sure you are comfortable. While the machine is switched on, you will be left alone for a few minutes, but the staff will be able to see and hear you through an intercom should you need help.

There may be short-term or long-term side effects from radiotherapy, which your healthcare team will discuss with you.

Short-term side effects will depend on what part of the body is treated. But they can include fatigue, diarrhoea, feeling sick and an irritable bladder – most of these go away a few weeks after treatment finishes.

Some people continue to have side effects for a while after treatment ends; these can include changes in bowel and/or bladder function.

Talk to your healthcare team about ways to reduce or manage any side effects. ‘Managing symptoms and side effects’ at the end of this chapter includes many practical ideas.

Biological therapies are a newer type of cancer treatment.

They work by changing the way the cells in our body work. They can interfere with the signals or blood supply that make cancers grow or block the DNA repair in cancer cells. They are often used as ‘maintenance’ treatment to try and prevent the cancer from regrowing. They may need to be given through a drip or may sometimes be in tablet form.

Biological therapies used to treat ovarian cancer include:

• bevacizumab (MVASI, Avastin)

• olaparib (Lynparza) and niraparib (Zejula) to treat patients with BRCA-related ovarian cancer.

BEVACIZUMAB (MVASI, AVASTIN)

Bevacizumab is used to treat people with ovarian cancer. It is sold under the brand name MVASI (which is identical to and replaces bevacizumab sold under the name Avastin).

Bevacizumab is a targeted therapy that blocks the protein VEGF. VEGF plays a key role in the development of new blood vessels. By blocking VEGF, bevacizumab may block the blood supply that feeds the ovarian cancer cells / tumour. This may prevent new blood vessels forming, which can stop the cancer from growing and spreading. Drugs that work in this way are called ‘angiogenesis inhibitors’.

Bevacizumab is currently being used for people with ovarian epithelial, fallopian tube or peritoneal cancer. But it is not suitable for everyone with these types of cancer. It is used for some people with a stage 3 or 4 cancer, as a first-line treatment or for women who are having a recurrence of their ovarian cancer.

Bevacizumab is used in combination with other drugs (such as chemotherapy). It is given with chemotherapy into the vein.

Like all drugs, angiogenesis inhibitors can have side effects. The most common side effects include high blood pressure, bleeding, kidney problems and wound healing problems. Your specialist will discuss these with you in detail.

PARP INHIBITORS

PARP is a protein in our body that helps damaged cells to mend themselves. Cancer cells with altered BRCA genes depend on PARP to keep their DNA functioning. PARP-1 inhibitors are drugs that stop PARP from mending the DNA cell damage, which means cancer cells don’t survive.

There is good evidence these drugs can lengthen remission in people with ovarian cancer. PARP drugs that are being used in current treatments, as well as being tested in ovarian cancer clinical trials are:

• niraparib (Zejula)

• rucaparib

• olaparib (Lynparza)

• pamiparib.

Research has shown that these drugs work in people with genetic mutations such as BRCA. They have also been shown to work when a similar variant (called a ‘somatic variant’) is found in the cancer. Research is looking into possible benefits of PARP inhibitors for women without a known genetic variant.

Several of the other genes identified as being associated with a higher risk for ovarian cancer are linked to the same pathways as the BRCA genes. Therefore, it is possible that the ovarian cancers that have occurred because of a variant in those genes might respond to PARP inhibitors in a similar way as the BRCA tumours.

OLAPARIB

Olaparib (Lynparza) is a PARP inhibitor sometimes used in ovarian, fallopian tube and peritoneal cancer. It is for people who have a change in the BRCA gene or women who have been identified as having either inherited (germline) or non-inherited (somatic) BRCA gene variation.

Your doctor may suggest olaparib:

• if your cancer has come back (relapsed) after previously having platinum chemotherapy

• as a maintenance treatment after chemotherapy if your cancer responded well to platinum chemotherapy.

Maintenance treatment aims to stop cancer from coming back or continuing to grow for as long as possible.

If you want to find out if you are eligible for this drug, please speak to your treating oncologist.

NIRAPARIB

Niraparib (Zejula) is another PARP-1 inhibitor. Niraparib stops PARP working, causing cancer cell death.

Early-stage trial results show niraparib can delay the growth of ovarian cancer for an average of 6 months longer than placebo treatments. Some people were still in remission more than 3 years later.

Niraparib is currently approved for use by Therapeutic Goods Administration for all people with advanced high-grade serous ovarian cancer. It is subsidised by the Pharmaceutical Benefits scheme (PBS) for those with a BRCA mutation.

We hope more treatments like niraparib will be listed on the PBS. In the meantime, we recommend speaking with your cancer specialist if you think you or someone close to you may benefit from having niraparib. They will know the individual situation best and be able to advise on possible methods of accessing niraparib.

IMMUNOTHERAPY

Drugs designed to use the body’s own immune system to fight cancer are being used in many types of cancers and are called immunotherapeutic drugs. There are now trials to assess the effectiveness of these treatments in ovarian cancer and some are showing promising activity, either alone or in combination with other drugs. You may be offered information on being part of these trials.

Historically, cancer treatment has had a ‘one size fits all’ approach. Treatment for ovarian cancer has generally involved debulking surgery with chemotherapy before and/or afterwards.

We now know that individual cancers can have differences in their genetic makeup. This means that people can benefit from treatments that target their cancer specifically. This is called ‘personalised medicine’.

Personalised medicine is a growing area of ovarian cancer research and treatment. It involves gathering information on someone’s individual genetics, or the genetics of their cancer, to better guide treatment decisions.

Targeted therapies are designed to target cancer cells specifically, to try to reduce side effects and improve results. Some of these treatments target genetic variants in cancer cells.

IS PERSONALISED MEDICINE AVAILABLE TO ME?

Various programs in Australia are trying to identify elements of individuals’ cancer that can guide doctors’ decision-making around treatment choices and clinical trials.

We recommend discussing these with your treatment team, asking questions such as:

• Have I had any genetic testing done (tumour testing, blood testing) and what were the results?

• Are there any clinical trials that might suit my type and stage of disease?

• Am I eligible for any of these programs, and if so, could you help me linking in with them?

After completing treatment and not having such regular contact with your healthcare team, some people feel alone. Remember, your treatment team are still there to support you if needed. Be sure to ask them for contact numbers in case you want to call for advice.

You may also begin to worry about the cancer coming back, which we discuss in the next section. This is when joining a support group can be really helpful.

When treatment finishes, it can help to plan a special event with those close to you, or even a holiday to mark the end of your treatment. This can help give your body and mind a rest from all you have been through since your diagnosis.

Those chemo nurses are angels in disguise; I was so blessed. When mine were not around I felt insecure. They were so supportive.

Cancer that comes back is called a ‘recurrence’. A recurrence of ovarian cancer usually means the cancer has started to grow again near where the original cancer began or in another part of your body.

It can be difficult to learn that your cancer has come back. However, there is still treatment available. While a cure may not be possible at this stage, many women can live for
an extended time with a good quality of life. Everyone is different, so it is important you speak with your oncologist about your individual situation and outcomes.

The approach to treatment and the prognosis depends on how long it took for the cancer to come back after completing chemotherapy. The longer the interval before it comes back, the better. If the interval is greater than 6 months, this is called ‘platinum-sensitive ovarian cancer’. If the interval is shorter and less than 6 months, it is called ‘platinum-resistant ovarian cancer’.

The most common type of treatment for ovarian cancer that has come back is chemotherapy. This is called ‘second-line’ chemotherapy. The aim of treatment is to shrink the cancer and control it for as long as possible. You and your healthcare team will work together to treat and manage the cancer.

WHICH TREATMENT WILL I HAVE?

The best type of treatment for advanced or recurrent cancer will depend on several factors including:

• where in the body the cancer is and how big it is

• previous treatment (if any) and how well you responded

• any side effects you had from your first treatments

• how long it has been since your last chemotherapy finished

• your overall health and wellbeing

• which treatment you prefer.

All of these are important to consider because they can all have an effect on how well the chemotherapy will work and how well you will cope with side effects. Several different chemotherapy drugs may help you. Your oncologist or specialist nurse can talk to you about their benefits and possible side effects.

Depending on your response to previous chemotherapy and whether the cancer had hormone proteins on its surface, your oncologist may also talk to you about using hormonal therapies such as anastrozole, tamoxifen or medroxyprogesterone. Hormonal therapies help block or lower the amount of hormones in the body to slow down or stop the growth of cancer. They are sometimes used for people with epithelial ovarian cancers, and more commonly used for people with stromal tumours.

CHEMOTHERAPY SCHEDULE AND DELIVERY METHOD

Talk to your oncologist about the most suitable schedule and delivery method for second-line chemo. Considerations may include whether intravenous (IV) access is a problem for you or whether nausea and vomiting may make oral chemotherapy less suitable.

I take every day one at a time, and I look forward to travel and more grandchildren.

IS SURGERY AN OPTION?

Surgery is an important part of the initial treatment for ovarian cancer, but its role in treating recurrent ovarian cancer is not so clear. When ovarian cancer recurs, it is not usually a single tumour that can be easily removed.

Your gynaecological oncologist may consider further surgery
if it has been some time since your original surgery, and there is good evidence the new cancer, or a significant part of it, can be removed. Usually, surgery is not an option if it is less than 12 months since your first completed treatment.

CLINICAL TRIALS

Ask your medical oncologist if there is a current clinical trial that may be suitable for you. Most of the improvements we have in the treatment of ovarian cancer today are based on the results of previous clinical trials. These trials are used to assess new treatments and quality of life for both initial and recurrent ovarian cancer.

See the ‘Clinical trials’ section that follows.

Being healthy, eating well and enjoying some exercise helps you to cope with a recurrence.

Treatment for ovarian cancer is constantly being improved.

The main way improvement happens is through clinical trials. In clinical trials, new treatments can be developed, evaluated and compared with current treatments.

Participating in a clinical trial may provide individuals with a better outcome from ovarian cancer, as well as benefiting others who may eventually receive the treatment being trialled.

WHAT IS A CLINICAL TRIAL?

A clinical trial is a carefully designed research study involving people. Each study has a specific aim, which may include finding better ways to:

• prevent, diagnose or treat ovarian cancer

• control symptoms and side effects of the cancer and its

  treatment

• improve quality of life during and after treatment.

The main aim of clinical trials is to find out if a new treatment or procedure:

• is safe and has side effects

• works better than the current standard treatment.

WHILE THERE IS MUCH PROMISING RESEARCH ...

It is important to remember that many ovarian cancer clinical trials are in the very early stages. Not all trials will result in the discovery of a new and effective treatment for ovarian cancer. Some trials may not be available to you in your state or territory, at your treatment hospital or even here in Australia. However, it is important and reassuring to know that the current treatment for ovarian cancer is based on previous clinical trials.

SHOULD I JOIN A CLINICAL TRIAL?

Your doctor may suggest you take part in a clinical trial, or you may ask if there is a trial you can be part of. Not everyone will be eligible for all trials. You will need to meet the guidelines for any proposed trial.

If there is a trial suitable for you, speak with your healthcare team and the people close to you. Advantages of participating in a clinical trial include:

• receiving new treatments before they are widely available

• having your treatment very closely monitored and followed up

• knowing your participation could improve future ovarian cancer treatments for other people.

Participating in a clinical trial may also mean additional tests, paperwork and possibly side effects. Your doctor or trials nurse will discuss this with you before you make a decision.

You can withdraw from a clinical trial and return to regular treatment at any time if you choose.

PHASES OF TRIALS

Clinical trials go through a number of phases (phase 1 to 4) to answer specific questions. Each of these phases tests the effectiveness and safety of the new treatment in the hope the new treatment will be better than the current standard treatment. As a new treatment progresses through each phase of the clinical trial, greater knowledge is gained about its safety and effectiveness.

Palliative treatment helps to relieve symptoms of a cancer that has come back or cannot be cured. It can control or slow down the growth of a cancer. This might be for many months or sometimes years. Palliative treatment will also help control symptoms of cancer, such as pain, shortness of breath and constipation.

Palliative treatment does not aim to cure cancer, but it will usually help improve people’s quality of life. See Chapter 5: If your cancer won’t go away for more information and questions for your medical team.

With ovarian cancer, palliative treatment for symptom management can include:

• chemotherapy

• radiotherapy

• secondary cytoreductive surgery

• biological therapies (targeted therapies)

• procedures to help remove build-up of excess fluid (ascites) in the abdomen; this procedure is called ‘abdominal paracentesis’.

WORKING WITH YOUR TEAM

Working in partnership with your healthcare team and playing an active role in making treatment decisions can help to give you a greater sense of control over your illness and your life.

You may find the following list of questions helpful when thinking about what to ask your doctor about your treatment for ovarian cancer.

GENERAL TREATMENT QUESTIONS

• What type of cancer do I have?

• What stage of disease do I have?

• What grade is my cancer?

• Has my cancer spread to other parts of my body? If so, how far?

• How fast is it growing?

• What type of treatment is available, what do you recommend and why?

• Who will be part of my multidisciplinary care team?

• How long will these treatments take? What written information can you give me about these treatments?

• How much will these treatments cost? Are there any ways to reduce the cost?

• Are there any clinical trials suitable for me?

• Are the latest tests and treatments for my type of cancer available in this hospital?

• Am I eligible to have genetic testing? Will you test my tumour as well as do a blood test?

• Will my treatment be given by a doctor who specialises in ovarian cancer?

• Can you arrange for me to have a second opinion?

SURGERY QUESTIONS

• Is my surgery being performed by a gynaecological oncologist?

• How soon will my surgery be done?

• Will my cancer grow while I wait for surgery?

• What can I expect after the operation?

• Will I have a lot of pain with the operation? If so, is it easy to control the pain?

• Will the treatment affect my sexual feelings or relationship?

• Will surgery affect my ability to have children? If so, can I preserve my fertility or eggs?

• How long will I need to take off work?

• When will I be able to drive?

CHEMOTHERAPY QUESTIONS

• How soon after surgery will I start chemotherapy?

• Will I have to stay in hospital for chemotherapy or will I be an outpatient?

• Which drugs will I have?

• How will the chemotherapy be given?

• What are the short-term and long-term side effects of this chemotherapy?

• Will it affect what I can eat? Are there specific foods I should or shouldn’t be eating?

• Are there any complementary therapies that might help me deal with side effects?

• Will I have pain due to the treatment? If so, what can be done about this?

• Is it safe to have sex during treatment?

• Will I be able to work during treatment?

• Can I talk to a gynaecology oncology nurse?

Ovarian cancer and its treatment can cause symptoms and side effects. These vary from person to person, at different times of the illness and treatment. Coping with these symptoms and side effects can be very difficult. Most people say the side effects of treatment can be the hardest part of having cancer.

This section includes practical tips to help you deal with symptoms and side effects that may affect you. We also explain where you can go to get further information and support.

We suggest you try to deal with any side effects early. Don’t try to ‘stick it out’ in hope they will stop or let them build up until they are unbearable. The earlier you get help or take prescribed medications for side effects, the more likely they can be controlled and allow you a better quality of life.

FATIGUE

Fatigue is one of the most common problems people face during and after their cancer treatment.

Fatigue means feeling very tired and having no energy. It is a weary and completely ‘worn-out’ feeling. People with cancer often describe their fatigue as overwhelming and debilitating. They say it is not relieved by sleep and can negatively affect your ability to do day-to-day activities, your self-esteem and your relationships.

Fatigue may be caused by chemotherapy, radiotherapy or other medicines. The cancer itself may also cause fatigue.

I was so tired, very fatigued and I slept a lot and forgot so much. This was the most frustrating part of my treatment.

Low red blood cells (anaemia) can also leave you feeling very tired and short of breath. Realising that fatigue is common for people with cancer, and asking for help, are important first steps in coping with it.

If ongoing fatigue is a problem, talk to your doctor. They may be able to suggest things to help you. See our suggestions to help with fatigue on the following pages.

Studies have shown that exercising during your cancer treatment reduces cancer-related fatigue. And exercise is now recommended to be part of your cancer treatment plan. Research to date has shown that those patients who exercise regularly during and after their treatment have less fatigue.

Ask your treatment team if you can have a referral to an exercise physiologist. They will be able to help you manage your fatigue with an effective exercise program to suit how you feel each day. For example, on days you feel the most tired, you may have exercises that can be done lying down.

General exercise tips:

• Plan your day so you have enough energy to do some exercise. Many people have the most energy mid-morning.

• On days you feel the most fatigued, lie down and do gentle stretches. Doing something is better than nothing.

• Break up your exercise into a few short sessions throughout the day.

• Always rest when you feel you need to. Rest and recovery are very important.

• Always seek medical advice about any exercise regime you plan to do before you begin.

Exercise must be appropriate to what you can cope with during each stage of your illness.

NUTRITIONAL AND DIETARY PROBLEMS

People with ovarian cancer can have eating and digestive problems. These problems may be worse if you have advanced cancer. They can include:

• loss of appetite

• weight loss

• feeling and being sick (nausea and vomiting)

• feeling full after only a small amount of food

• changes in bowel habits such as constipation

• loss of or changes in taste (metallic taste)

• sore mouth (dry mouth and ulcers).

These problems can be a result of your cancer, treatment, tiredness, pain and depression. These symptoms may affect your ability to consume sufficient nutrition. Many people with ovarian cancer experience periods of time where they are malnourished. Getting support from a dietitian (an accredited practising dietitian) with experience in cancer is ideal. In addition to working with a dietitian, talk to your doctor to ensure you have the appropriate medical management of these symptoms.

Anti-sickness medications (anti-emetics) and natural therapies (such as acupuncture and/or ginger) can help prevent and treat these side effects.

LOSS OF APPETITE AND WEIGHT LOSS

The aim is to maintain your weight during treatment, even if you feel you’re carrying extra weight. If you notice you’re losing weight, ask to speak with a dietitian.

• Eat small amounts often (every 2 to 3 hours). Try to eat before you get too hungry as an empty stomach can make you feel sicker.

• Have plenty of nutritious snacks on hand (nuts, crackers with cheese, yoghurt, fruit, dried fruit, muesli bars, boiled egg).

• Try to make eating times relaxing and enjoyable. Eat with friends and family if possible.

• Accept offers of practical support from family or friends. Ask for nutritious meals that can be frozen and reheated.

• If you’re losing weight without trying, boost the energy (calorie) content of your meals by adding an extra tablespoon of olive oil, butter, margarine or grated cheese to hot meals like pasta and rice dishes. You can add milk powder or cream to porridge, too. This adds calories without adding extra bulk.

• Eating enough protein is also important to help maintain your muscles. Include red meat, chicken, fish, eggs, tofu, legumes, nuts and dairy foods regularly across the day.

• A homemade smoothie made from milk, yoghurt and fruit is an easy way to boost your nutritional intake when you’re not feeling well.

• Ready-to-drink supplements can be useful if you’re struggling to eat well. Your dietitian can recommend one that is appropriate for your needs.

FEELING AND BEING SICK

Feeling sick (nausea) and being sick (vomiting) affects your ability to eat and drink. Nausea can be caused by pain- relieving drugs, constipation, cancer growth, a blockage of the bowel or slow digestion. It is important to try to control nausea and vomiting so as you don’t become dehydrated. Refer to the tips in Table 3.

MOUTH CARE AND TASTE CHANGES

Having changes to taste due to side effects from cancer treatment (chemotherapy) can be distressing. The changes happen in the lining of the mouth and the salivary glands, which make saliva. The healthy balance of bacteria in the mouth can become disrupted, which may lead to mouth sores/ulcers, infections, and tooth decay. Your mouth may feel very dry and sore, making eating and drinking more difficult. Keep your mouth clean and as healthy as possible during your treatment.

These tips may help:

• Keep your lips moist with lip balm. Suck on ice blocks or sip water regularly to keep your mouth moist.

• If you have mouth ulcers, keep your mouth clean and moist by using regular mouthwashes (alcohol-free) and salt gargles.

• Avoid rough, crunchy or dry foods (crisps, nuts, dry biscuits) and choose foods that are moist (casseroles, stews, soups, pasta sauces).

• Try chewing on sugar-free gum or sucking on mints.

• If food tastes bland, try to boost the flavour of your meals by using fresh herbs, lemon juice or other sauces (soy sauce).

• If you notice a metallic taste in your food, try a small piece of fresh fruit or juice just prior to eating, or suck mints and boiled sweets in between meals. Some people find using plastic cutlery rather than metallic cutlery helps.

• See your dentist if you develop any tooth ache or gum problems.

  Refer to Table 3 for more tips.

Table 3: Tips for dealing with fatigue, nausea and vomiting

PAIN

People with cancer have pain for many reasons. It may be caused by the cancer, the treatment or something else. The main causes include:

• side effects of surgery, chemotherapy or radiotherapy

• infections

• spread of cancer to other organs in the body

• blockages in organs such as the bowel

• the tumour pressing on nerves, organs or bone

• bone fractures if the tumours spread to the bones

• muscle stiffness due to less movement than usual or tension.

It can be very frightening to be in pain. You may worry about having a lot of pain due to your cancer or its treatment. It may help you to know there is usually something that can be done to help most types of cancer pain.

There are different types of pain, such as nerve pain, bone pain, chronic pain, referred pain and muscle pain. Each one may be relieved using different treatments or pain-relieving drugs.

Talk to your doctor to work out the cause of your pain and how to best manage it. Refer to Table 4 for tips on managing pain.

HAIR LOSS

Chemotherapy used to treat ovarian cancer may cause hair thinning or loss. This is because it affects the healthy cells involved in hair growth.

Hair loss is usually temporary. If it happens, it will start about 2 weeks after your first treatment. Hair generally starts to return after your final treatment ends.

Hair loss is common and usually very rapid with paclitaxel. You may lose hair all over your body, including eyebrows, eyelashes, arms, legs, nasal hairs and pubic hair. Your hair will grow
back once you finish chemotherapy, usually within weeks or months. While your hair is falling out, your scalp can feel itchy, tender and hot.

Many people struggle with hair loss because hair and its appearance are closely related to our self-esteem. Losing your hair makes cancer obvious to others and this can be difficult to cope with. Many say losing their hair is one of the hardest parts of having cancer.

It is only natural to feel frightened, angry and upset about losing your hair. But it helps to remember it is almost always temporary.

Some people who have very long hair may be able to cut their hair before treatment and donate it to make wigs. Those who have done this say it brought something positive out of a traumatic situation. Contact Cancer Council 13 11 20 to find out about donating your hair.

When it comes to hair loss, it’s a great help to be prepared and think about ways to lessen the shock before you start chemo.

Read our tips on coping with hair loss in Table 4.

Can I prevent losing my hair (cold caps)?

Preventing hair loss from chemotherapy is not always possible. However, you may be able to reduce the amount of hair you lose by using cold caps. Cold caps decrease the scalp temperature, and this reduces the blood flow to the scalp and lowers the amount of chemotherapy that gets to your hair follicles, meaning the risk of hair loss may be reduced.

There is no guarantee cold caps will work, and you will not know until you try it. Some people still have hair thinning or lose their hair completely. Not all treatment centres offer cold caps.

Cold caps are not suitable for everyone having chemotherapy and not all people are able to tolerate them. You would need to discuss this option with your specialist doctor.

If you are going to lose your hair, make sure you attend a Look Good ... Feel Better session beforehand, so you are prepared and have some sassy hats and wigs on standby.

Table 4: Tips for managing pain and hair loss

CONSTIPATION

Constipation may be caused by your cancer treatment, anti-sickness (nausea) or pain-relieving drugs. It can also be a result of the cancer affecting the bowel or being less active when you are unwell. It is important to let your doctor know if you are constipated, as leaving it too long can lead to more serious problems. The symptoms you may have if you are constipated include:

• having less bowel actions

• hard or lumpy bowel actions

• pain, straining or discomfort when having a bowel action

• abdominal pain or discomfort.

For tips on preventing and/or controlling constipation see Table 5.

BOWEL OBSTRUCTION

The bowel can sometimes become blocked as a result of surgery or due to the cancer growing. This blockage is called a ‘bowel obstruction’. Symptoms include nausea, vomiting, and abdominal pain, difficulty passing gas, abdominal swelling and cramps that come and go. You may also leak liquid faeces from your rectum.

The worst side effect of chemotherapy for me was constipation. I ended up taking laxatives a couple of days prior to the chemotherapy sessions and this helped. It really is one of those subjects no one wants to mention, but looking back, I wish I had known this: it took me 3 sessions before I got it sorted out.

Contact your doctor as soon as possible if you have any new or different symptoms. A bowel obstruction can often be relieved with treatment procedure in hospital. Sometimes a further operation may be necessary.

DIARRHOEA

Some chemotherapy drugs, radiotherapy and antibiotics can cause diarrhoea. Stress, anxiety and infections can also cause diarrhoea. Talk to your doctor if you have diarrhoea, stomach pain or cramps. For tips, refer to Table 5.

Table 5: Tips for managing diarrhoea and constipation

HEARING CHANGES

Some chemotherapy drugs, especially platinum-based chemotherapy, can damage your inner ear – this is called ‘ototoxicity’ and can result in loss of hearing high-pitched sounds, ringing in your ears (tinnitus) or dizziness. This can be very distressing.

Let your doctor know if you notice any change in your hearing or if you have ringing in your ears or dizziness. For tips, refer to Table 6.

Table 6: Tips for managing skin problems and hearing changes

SKIN PROBLEMS

Chemotherapy may cause skin problems including redness, itching, dryness and breakouts, while radiotherapy can cause dry or red skin in the area being treated. For tips, refer to Table 6.

FLUID BUILD-UP (ASCITES)

Ovarian cancer can cause a build-up of fluid in the abdomen known as ‘ascites’ (pronounced a-site-eez). It is sometimes called ‘malignant ascites’.

Ascites is often associated with how advanced your cancer is. About 90% of people with stage 3 and 4 ovarian cancers have ascites at some stage in their illness.

The abdomen contains organs such as the bowel, liver, spleen, bladder, pancreas and stomach. Covering these organs is a layer of tissue (peritoneum). It is made up of 2 layers: one lines the wall of the abdomen and the other covers the organs. A small amount of fluid is produced within these layers to allow the organs in the abdomen to move smoothly. With ascites, fluid builds up between the 2 layers and causes the tummy to swell up. This can be very uncomfortable.

The fluid may build up when:

• lymph nodes get blocked in the tummy and are unable to drain properly

• cancer has spread to the liver, which will increase the pressure in nearby blood vessels, forcing fluid out into the abdomen

• cancer cells irritate the abdominal tissue lining (peritoneum) and cause over-production of fluid

• the liver and heart are not working properly.

All these situations can cause ascites. The main symptom is abdominal swelling, which can happen over a few days or months and is very uncomfortable. The build-up of fluid puts pressure on all the abdominal organs, which can lead to further symptoms such as:

• bloating

• abdominal pain

• back pain

• loss of appetite

• indigestion

• constipation

• needing to pass urine often

• breathlessness as the swelling spreads and puts pressure on the lungs

• tiredness and weakness (fatigue)

• feeling or being sick.

As well as a physical examination and blood tests, your doctor may also do some tests to diagnose ascites, including having an ultrasound and/or CT scan. A sample of the fluid is taken to check for cancer cells or infection.

To treat the fluid or prevent it from building up in your abdomen your doctor may suggest one or more of the following treatments:

• having a tube inserted to drain the fluid (paracentesis – see figure 2)

• chemotherapy
• water tablets (this is rare).

In most people, draining the fluid usually relieves symptoms. The fluid can build up again over time so your doctor may also suggest you take some fluid tablets or have a course of chemotherapy to help prevent this happening. You may also need it to be drained again.

Although uncommon, possible complications following any of these procedures include infection, pain, blockages and leaking of fluid after the tubes are removed. Your doctor will discuss the risks involved in any procedures prior to it happening.

‘CHEMO BRAIN’

After having chemotherapy, many people have problems with their short-term memory, concentration and processing information. This is often called ‘chemo brain’.

This problem can be frustrating and debilitating, especially if you have previously had a good memory or if you need to concentrate carefully for work or study. It’s not clear if chemo brain is caused by chemotherapy alone or a combination of factors – including chemotherapy, the stress of living with cancer, hormonal changes and the natural ageing process.

Regardless of its exact cause, it is a real and distressing problem. It can help to know that many other people have the same problem! You can do practical things to help, and the problem usually improves with time.

Don’t be hard on yourself when you forget things or feel a bit confused. Just take a break and acknowledge it is a side effect from your treatment.

Talk to your doctor or another member of your healthcare team if you have ongoing concerns about your memory or concentration. Refer to Table 7 for tips on managing chemo brain.

I had to keep reading things over and over with the studies I was doing because my chemo brain made concentrating very hard. I had to do it bit by bit but it was still possible.

Table 7: Tips for managing chemo brain and infection risk

INFECTION AND CHANGES IN YOUR BLOOD COUNTS

Chemotherapy can reduce the number of white blood cells in your body (neutropaenia), and this can increase your risk
of developing infections. Your white blood cell count will be checked regularly during treatment. If a blood test shows your count is low, your medical oncologist may delay the next round of chemotherapy.

If you feel like you have a fever, seek help immediately. It is important to have a thermometer at home in case you feel you have a fever. Febrile neutropaenia is a serious situation and needs urgent medical intervention.

IMPORTANT NOTE

If your temperature reaches 38 degrees or over, you should attend the emergency department immediately.

Seek urgent help if you have any unusual symptoms that may indicate you have an infection such as a fever, sore throat, shaking (chills), diarrhoea, vomiting, burning when you pass urine, redness or swelling around a wound or your chemotherapy device (central line, PICC line, Hickman line).

If you are unable to get to the emergency department, call 000.

Treatments can also affect your level of red blood cells and platelets. If your red blood cells become too low (anaemia), you may need to have a blood transfusion. Decreased platelets can lead to serious problems such as bleeding that won’t stop. Seek immediate help if you have a nosebleed or notice you are bruising easily.

Bleeding or bruising is a rare side effect of chemotherapy caused by a drop in blood platelets. Your doctor will keep
a close eye on your platelet count during treatment, but always let them know if you are bruising more easily than usual, are bleeding from your gums or nose, or have blood in your bowel motions.

Refer to Table 7 for tips on managing infection risk.

URINARY PROBLEMS

Surgery for ovarian cancer can involve cutting the tissue around the bladder and ureter. Most people will have difficulty emptying their bladder in the days after surgery, and so a catheter is used to drain away urine. Sometimes, it may take a little longer for bladder function to return to normal, but ongoing problems are very rare.

Radiotherapy may cause an irritable bladder. It can sometimes cause longer-term problems with urinary function. Menopause can also cause urinary tract changes including frequency, burning and incontinence.

Tell your doctor or nurse about any urinary symptoms.

NERVE PROBLEMS: PERIPHERAL NEUROPATHY

Peripheral neuropathy is the result of damage to the nerves outside the brain and spinal cord (peripheral nerves). It can be a side effect of certain chemotherapy drugs used
to treat ovarian cancer (such as carboplatin and paclitaxel). These drugs can damage nerves that affect the feeling and movement in your hands and feet. The most common symptoms of peripheral neuropathy include:

• tingling, burning, numbness or pain in the hands or feet

• loss of feeling, especially in the hands and feet

• muscle weakness

• problems with balance or walking, and clumsiness

• constipation

• feeling lightheaded or dizzy.

The symptoms of peripheral neuropathy can be mild and will usually go away once treatment has stopped. But for some people they can be severe and last longer. For example, it can be difficult to do simple tasks like doing up buttons or tying shoelaces. You may also be very sensitive to hot and cold and need to take great care when handling hot things as you may not feel it if something is burning.

Peripheral neuropathy can be challenging to cope with. Unfortunately there is no treatment to improve the nerve damage. However, there are ways to help reduce the impact of the problem. Talk to your doctor about adjusting your treatment to avoid further nerve damage.

What can help peripheral neuropathy

Sometimes drugs used to treat other medical conditions have been found to help with treating nerve pain. One example
of this is the antidepressant duloxetine (Cymbalta). Anti- inflammatory drugs and other painkillers such as gabapentin and pregabalin (Lyrica) can also help with nerve pain.

International research suggests the following treatments may also help in preventing or controlling neuropathy related to chemotherapy:

• vitamin B6

• calcium and magnesium

• glutathione, a vitamin rich in antioxidants.

Please talk to your doctor if you want to explore any of these options. The most important tip is to tell your doctor as soon as you have any symptoms.

Other ways known to help reduce peripheral neuropathy are:

• exercise – which can help strengthen muscles, reduce pain and cramps and improve balance and circulation

• mindfulness and meditation – may assist in drawing attention away from painful symptoms

• wearing comfortable and supportive shoes that do not cramp/confine your toes

• keeping hands and feet warm

• using roll-on deodorants instead of spray as pushing the spray can be difficult.

EMOTIONAL EFFECTS

Cancer symptoms and side effects of treatment can dramatically affect the emotional, intimate and spiritual parts of your life. You may experience sadness, depression or anxiety and your sexual desire may be affected. See Chapter 3: Staying well for more information.

After you finish your treatment, you will have regular check-ups.

Your doctor will decide how often you will need check-ups – everyone is different. Your check-ups will gradually become less frequent if you have no further problems.

If your ovarian cancer was diagnosed in the advanced stages, it is likely you will continue to have regular check-ups as often as you need them. And these will be with different members of the healthcare team (specialist nurses and doctors, social worker, physiotherapist etc). If your cancer comes back, you may need further treatment and it may be different from your first treatment.

It is important you tell your specialist doctor or GP if you notice any new symptoms. In the days or weeks leading up to your appointments, you may become anxious and worry more about your cancer coming back. This is only natural, so be kind to yourself during this time.

There is more information about follow-up care and how to cope with your concerns in Chapter 3: Staying well. If you have any concerns in between follow-up appointments, see your GP for advice.

Finishing treatment is rather frightening; you are suddenly on your own. It is terrifying, you are out there without the safety net around you, it is very hard to get used to. It was an adjustment. It didn’t last long − it was a change in circumstances that you had to get used to.

having cancer and undergoing cancer treatment can be tough on your body, mind and soul. This chapter introduces you to some of the simple things that have helped others to feel better along the way. It covers ways to help you cope with your emotions, talking to those close to you and changes to your sexuality, body image and relationships. It discusses the use of complementary therapies, diet and exercise to help calm your mind and support your physical and emotional healing.

Allow yourself to explore what can help you to feel stronger and calmer. Many people with ovarian cancer have discovered a lifestyle change, a hobby or a relaxing ritual that has stayed with them for life.

Often lack of time, low energy and even guilt can get in the way of taking time out for ourselves. Giving yourself permission to take one moment each day, small or large, that is just for you, can help give your mind a break from the constant flow of all things cancer- related and helps put you in a better position to manage your own stressors and also those of others.

Many women with ovarian cancer are interested in trying complementary therapies. These are natural therapies used alongside mainstream or conventional cancer treatments (such as chemotherapy, radiotherapy), which aim to treat both mind and body. Examples of commonly used complementary therapies include massage, mindfulness meditation, yoga and acupuncture.

These will not treat or cure cancer. However, a few have been shown to help some people feel and cope better with their cancer and its treatments. They work on helping your mind and body feel better.

Even 18 months post-treatment I find it difficult to switch off the cancer thoughts. When I go to yoga and Pilates classes, the atmosphere and activity draws my focus away from these thoughts and helps to give me a break from it all.

Other terms you may hear being used to describe complementary therapies include:

• ‘integrative medicine’, which is a total approach to the care of a person’s body, mind and spirit that combines standard medicine with lifestyle approaches and complementary medicines that have shown the most promise

• ‘holistic medicine’, which is a form of healing caring for the whole person – body, mind, spirit and emotions. Its aim is to give a feeling of optimal health and wellbeing.

Carefully chosen complementary therapies can help to:

• manage symptoms and side effects – including nausea, hot flushes, dry mouth, pain and fatigue

• relieve stress, anxiety and sleeplessness

• encourage an overall feeling of wellbeing.

Research shows those with ovarian cancer can benefit in many ways from using complementary therapies. Please seek expert advice from a qualified health professional when you are making choices about using any complementary therapy.

ARE ALL COMPLEMENTARY THERAPIES SAFE TO USE?

Most complementary therapies are safe to use alongside your conventional treatments. Your doctor may even recommend certain therapies such as massage, acupuncture or meditation to help with reducing pain, nausea and anxiety.

Some complementary therapies are called ‘natural therapies’. However, ‘natural’ does not always mean ‘safe’. Many ‘natural’ herbal, vitamins and other supplements you can buy over the counter at the chemist have serious side effects. These supplements may interfere with other drugs you are taking. For example, some herbs can make your skin more sensitive to sunlight, so you should not take them if you are having radiotherapy treatment. Taking high doses of vitamin C while you are having chemotherapy treatment may reduce the effectiveness of treatment, and in some studies is reported to increase chemotherapy side effects.

BEFORE YOU START...

Most cancer doctors support complementary therapies used alongside your conventional treatment. However, there are a few therapies known to interact with and cause side effects when used with conventional treatments.

We recommend you discuss any therapy you may be using, or you are thinking about using, with your cancer specialist and GP. They may suggest you discuss any natural products (such as herbal medicines or vitamin therapies) with your pharmacist. You need to make sure they will not interact in a negative way with medicines you are already taking or your chemotherapy.

Alternative therapies are quite different to complementary therapies. They are promoted as an alternative to conventional treatments such as chemotherapy, radiation and surgery.

Alternative treatments are unproven, often expensive and may be harmful. Well-meaning friends and relatives may also suggest a certain food, diet or therapy to cure your cancer, but it is good to be aware that there are a lot of unproven remedies/treatments for cancer advertised on the internet and elsewhere without any control or regulation. Be wary too of any therapy claiming to cure cancer that is very expensive, requires you to stop conventional treatment or advises to not tell your doctor about the treatment.

Examples of alternative therapies include megadosesvof vitamins such as high-dose vitamin C, shark cartilage, restrictive special diets and juice fasting. There are many websites promoting so-called ‘cures for cancer’. They have not been scientifically proven to work.

Always check with your medical team first.

WHICH THERAPIES MIGHT HELP?

Different therapies may help in different ways, and at various stages of your illness and treatment.

Massage has been known in some situations to reduce muscle tension and pain, improve sleep, reduce fatigue and provide deep relaxation. Acupuncture has been well researched and is known to help relieve pain, nausea, vomiting and other side effects of chemotherapy and radiotherapy for some people.

Meditation and other relaxation techniques such as yoga, tai chi, music and art therapy can also help with pain management, anxiety and depression. However, it is important to know that each person’s condition is unique and the responses from these therapies may vary from person to person.

I went along to an art group (never having painted before) – I found it a great way to relax. Trying to mix a paint colour just right banishes all thoughts from your mind!

WELLNESS RETREATS AND PROGRAMS

Wellness retreats and programs provide people who have cancer with an integrative, holistic approach to health and healing in a nurturing environment. These retreats and programs focus on a range of complementary therapies, including meditation and visualisation, as well as information on healthy eating and physical activity.

There are several centres in Australia and overseas that run specialty cancer programs; you may find them on the internet. However, it is important before you pay for one of these retreats that you discuss the benefits of the program with your health professional. Ask yourself what you are hoping to get out of attending.

If you find a program claiming to cure your cancer, be suspicious. See the information above about ‘What about alternative therapies?’

Always check with your medical team before committing to any program or retreat.

FINDING A THERAPIST

Most reputable therapists will be members of a professional body (such as a college or association). This means they will follow a strict code of conduct. However, there will be those who are not so careful or caring, and there may not be a professional body for all types of therapies.

You need to feel confident about your therapist and know what you hope to gain from the therapy, so choose carefully. The following people and organisations can help you do this.

• GPs, specialists or oncology nurses often know about the therapists who work together with mainstream medicine.

• Some cancer treatment centres at hospitals offer complementary therapies, including meditation, relaxation and stress management.

• The Australian Traditional Natural Medicine Society is the main professional organisation for natural therapists in Australia and has a list of practitioners (www.atms.com.au).

• The Australasian Integrative Medicine Association is the peak body for medical practitioners who practise integrative medicine and has a list of practitioners (www.aima.net.au).

It’s the little things that can help you get through the rough times – the foot and hand massages, the company of good friends when you are feeling well, a great book and lots of rest.

Eating a variety of healthy foods and staying active can help improve your physical and overall wellbeing during and after your cancer treatment.

Eating well and being active can help:

• lift your energy levels and mood

• you to cope better with the side effects of treatment

• wounds and tissue to heal after surgery, chemotherapy and radiotherapy

• improve your body’s ability to fight infection

• keep your weight at a healthy level.

For eating tips to help overcome nausea, vomiting, constipation and diarrhoea, see ‘Managing symptoms and side effects’ in Chapter 2: Treatment. It includes simple ideas to help reduce fatigue, which is another important part of your overall wellbeing.

Ovarian Cancer Australia – for information on the benefits of support from an exercise physiologist and dietitian, 1300 660 334

HEALTHY EATING

Healthy eating during cancer treatment and beyond is all about eating a wide range of nourishing foods that can help you recover quickly, boost your energy levels and feel good in your body. There are generally no special foods you need to eat or avoid. A well-balanced diet means eating a variety of foods from each of the core food groups:

• fruit

• vegetables

• grains and cereal-based foods such as bread, breakfast cereal, rice, pasta, noodles

• protein-rich foods such as legumes, tofu, chicken, fish, eggs, red meat

• dairy or calcium-fortified dairy alternatives

• foods rich in healthy fats such as olive oil, olives, avocado, nuts and seeds.

But cancer and its treatment can often make healthy eating a challenge – especially when you are feeling sick, are constipated, are in pain, have lost your appetite, or are simply too tired to eat. In these situations, don’t become too worried about only eating the healthiest foods. There will be times when it is better to just eat what you feel like eating. For example, you may only feel like eating chocolate or hot chips. In the short term, it is better to take in some calories than none, especially if you are already losing weight. In time, you will want to get back to eating a well-balanced diet.

It is also very important to stay hydrated during your treatment, especially if you are having chemotherapy. Water and herbal teas are good. If you have a sore mouth due to side effects of your treatment, it may be best to avoid crunchy, spicy and citrus foods.

Some people find speaking to a dietitian helpful. Ask your GP or specialist for a referral. If you are struggling with a poor appetite and/or finding eating difficult, speak with an accredited practising dietitian for tailored advice on how you can maintain a healthy diet. This often means having flexibility with your meals and snacks to include foods high in calories and protein. Supplementary high-calorie, tasteless, nutritional powders can be added to most meals and drinks to help boost calorie intake without increasing how much you have to eat.

Supplementary nutritional drinks can help boost your calorie intake as well. Your dietitian can arrange for these be delivered to your home at a discounted cost.

BEWARE OF ‘ANTI-CANCER’ DIETS

Beware of any special diets, foods or supplements that are promoted as being especially beneficial for people with cancer or that claim to ‘cure’ cancer.

None of these claims have been scientifically proven, and some can cause harm. Excluding food groups you need for health, energy and good immune function may interfere with the success of your treatment or cause you to lose too much weight.

BEING ACTIVE

Being active helps boost your energy, decrease fatigue, relieve stress, digestion and constipation, increase your appetite, and may reduce anxiety and depression, and increase your general wellbeing. These are all very important during your cancer treatment and when recovering.

Always talk to your doctor, accredited exercise physiologist or physiotherapist if you are unsure if certain activities will still be okay for you, or if you are unsure about what level of activity you can start or continue with.

If you have some loss of mobility or other movement issues after treatment, your doctor may refer you to an exercise physiologist or physiotherapist. They can help you begin or resume regular exercise safely. Returning to exercise, or becoming more physically active, may be part of your wellness goals. An exercise physiologist or physiotherapist who specialises in working with people with cancer will provide evidence-based exercise recommendations for you. They can assess your energy levels, current fitness, previous activity, how treatment has impacted you, and discuss what you enjoy doing and your goals for becoming more physically active. From this information they will create an exercise program to help you achieve these goals while considering any limitations and motivators you may have.

I am totally convinced exercise helps me. But you have to make it a priority and not be put off by the fatigue. You also have to accept it’s not always sensible or possible to do as much as you used to, especially if you are working as well.

Over time, you may also be able to improve your physical endurance. Walking, swimming, cycling and water exercise classes are gentle activities many people feel comfortable with when they are recovering from ovarian cancer. You may also want to look into yoga, tai chi or Pilates to help with improved movement. Be careful, as these forms of exercise often require you to lie on your stomach and this may not be appropriate immediately post-surgery for ovarian cancer.

Ovarian cancer surgery can weaken core muscles. This surgery may also result in an early menopause, leading to a possible increase in fat and decrease in muscle. A safely prescribed exercise program can improve abdominal strength, increase muscle and reduce body fat. Exercise has also been proven to enhance mood, improve sleep, control weight gain, protect against heart disease and maintain bone health.

Other exercise tips:

• Ask your medical team for a referral to an exercise physiologist early in your treatment so you can gain the most benefit long term.

• Exercising throughout your treatment including chemotherapy and post-surgery is safe. But you will need to make adjustments to ensure you don’t overdo it.

Exercise can improve your tolerance to chemotherapy and prevent loss of physical strength due to treatment. Exercise can also help make you feel more in control of your situation and has been proven as the most effective way to help treat cancer-related fatigue.

Whichever activity you choose, you will need to start slowly and gradually increase your activity level. If you’re looking for a new activity to try as you continue to recover, it’s ideal to enjoy being active for at least 30 minutes a day on most days of the week. Your doctor, physiotherapist or exercise physiologist can advise you on the ideal amount and intensity of activity for you.

EXERCISING SAFELY

Receiving the right information tailored to your own personal situation is important to make sure you receive a safe and effective exercise and nutrition program. Ovarian Cancer Australia has established an exercise and nutrition program run by accredited exercise physiologists and dietitians specifically for women with ovarian cancer. Please speak to one of our Support Nurses on 1300 660 334 to see if you qualify.

There is growing evidence to suggest that regular exercise after a cancer diagnosis can reduce the chance of some cancers coming back.

Being diagnosed with ovarian cancer is the beginning of an emotional journey, often with no certainty about what is going to happen.

Chapter 1: Finding out discusses the range of emotions you may have when you are first diagnosed and how you might share your feelings, build support and nurture yourself. For some people, the early days of shock, anger, panic and numbness are the most frightening. Over time, these intense feelings of distress usually begin to ease.

As your journey continues, different emotions are likely to surface at different times. The phase of your treatment, your physical health and the way you have previously coped in difficult times will affect the way you feel. Your family, intimate relationships, close friends, financial and work/study situations will also influence how you feel. The intensity and persistence of emotions varies greatly from one person to another and there is no ‘right’ or ‘wrong’ way to feel.

WORKING THROUGH YOUR FEELINGS

However you feel, try to acknowledge any strong emotions and allow yourself the opportunity to experience them. Don’t shut them out or put on a brave face – it is likely they will just keep simmering away.

You may find sharing your concerns with a family member, a friend or a member of your healthcare team helpful. Saying something like ‘I am feeling really alone and afraid because ...’ can help begin supportive conversations; whereas withdrawing from friends and family can leave them feeling unable to help.

People sometimes report the friends they expected to be most supportive are not always the ones who end up being the most supportive. This does not necessarily mean they do not care. Certain friends and family may be better able to cope with what is happening for you and support you better than others. Support sometimes comes from unexpected places.

Let your healthcare team know how you feel. They will want to help and if they know you are struggling, they can guide you towards support.

Chapter 4: Support includes information about support groups and networks that can help you connect with others in similar circumstances.

Expect to have down times – serious bad times! We all do. Fear creeps into your room sometimes in the middle of the night. Don’t fight it, just let it pass over. It will go.

SADNESS, LOSS AND DEPRESSION

Many people with ovarian cancer experience sadness, feelings of loss and some level of depression. This is a natural response following a cancer diagnosis, having to face treatment and coping afterwards.

Ovarian cancer can result in many losses in your life – a loss of financial security, relationships, work security, and some of the hopes and dreams you had for the future. You may feel like you have lost your identity – the person you were before you had cancer. This can be very distressing.

If you have had your ovaries and uterus removed and can no longer have children, you may feel a profound sense of loss.

The physical effects of cancer and side effects of treatment can also leave you feeling tired and low in mood.

There is, however, an important difference between feeling low or sad for a while and feeling depressed for long periods. Depression is much harder to shake and can go on for a long time if you don’t seek help. If you have continuous feelings of sadness, lack motivation, have reduced pleasure in daily activities, have difficulties sleeping or low self-esteem, you may be suffering from depression.

Thoughts of self-harm and suicidal thoughts also indicate you are depressed. You need to seek medical help urgently.

See Chapter 4: Support.

ANXIETY AND FEAR

Anxiety and fear are natural responses to new and distressing situations. Not knowing what is going to happen next or what the future holds can make you feel worried and anxious.

Many people feel very anxious about their first chemotherapy treatment. The side effects and how you will respond to treatment are unknown. Many treatments side effects such as hair loss, pain, loss of appetite and nutritional changes can also leave you feeling anxious.

When you finish treatment, you may feel alone and worried about the cancer coming back. And as time goes on, your follow-up visits may trigger fear and anxiety.

Suffering anxiety and fear for any length of time is frightening and exhausting. Repetitive thoughts can develop, making you feel more anxious and overwhelmed. It is important you let someone know how you feel and get the help you need.

I go for a walk first thing every morning and if I don’t do it I feel bad – it is my sanity. Sometimes it is not easy as I feel so tired but I psych myself into it and I am always pleased I did.

PRACTICAL WAYS TO HELP YOURSELF

Here are some ways to care for yourself.

• Acknowledge that feeling fear, uncertainty, isolation, grief and loss are normal in your situation and allow yourself to experience and express these emotions.

• Try to get out regularly and connect with people who give you hope, motivation and strength. Surround yourself with people who bring you joy, not those who drain you.

• Do little things you know make you happy. For example, be with your animals, draw, paint, read, listen to music or walk in the park.

• Try relaxation exercises, meditation or deep breathing.

• Ask for help when you need to.

MINDFULNESS MEDITATION

Some people turn to relaxation practices such as mindfulness meditation to help manage their anxiety.

Mindfulness meditation is a very old practice that people use to settle their racing mind. You are not aiming to clear your mind of thoughts, but simply notice them as they arise and disappear. You can use your breath as an ‘anchor’ during meditation. Focus on your breath as you breathe in and out, and if your thoughts wander, bring your focus back to your breath.

There is evidence that mindfulness meditation can help with healing and improve immune function. It can help with your overall quality of life, including pain, anxiety, depression and nausea.

Not everyone finds it easy to meditate. You may not be able to sit still for long! But even just a few minutes a day of ‘just sitting’ and ‘just noticing’ your thoughts may help.

WHERE TO GET HELP WITH DEPRESSION AND ANXIETY

For some people, feelings of sadness, anxiety and fear can be overwhelming. They may not improve with time. If you have persistent feelings like this, it’s really important you talk to a health professional as soon as possible. There is a lot of support and there are very effective treatments for depression and anxiety that can help you cope and improve your mood.

Talk to your GP or cancer specialist about seeing a counsellor or psychologist. Sometimes, taking medication for a short while may help: for example, an antidepressant or anti- anxiety tablet. Some people are reluctant to use these types of medications in fear of becoming dependent on them or because of side effects. If you are worried about either of these things, talk to your doctor. If your symptoms are troubling,

and medication will help, then the benefits are more likely to outweigh any potential negative side effects.

Your hospital may provide you with access to counselling services or you may be eligible to get a rebate for sessions with a psychologist or counsellor through Medicare or private health insurance. Cancer Council 13 11 20 may also be able to offer you counselling, either face to face or on the phone.

COUNSELLING AND THERAPY

There are several types of therapy that you may wish to explore. These therapies can be helpful if you feel that you are struggling to accept or adjust to the new reality imposed by cancer. You may need to look into several therapies before finding the right ‘fit’ for you.

For example, psychological therapy, sometimes called ‘talking therapy’, involves safely exploring the psychological difficulties getting in the way of how you would like to feel. Acceptance and commitment therapy is another type of therapy and is designed to help people to cope with overwhelming feelings when faced with difficult situations that cannot be controlled. It is a type of cognitive behavioural therapy. Rather than trying to change distressing thoughts, it encourages mindfulness, acceptance and living according to your values.

Some psychologists and counsellors are more generalist in their training and don’t focus on just one type of therapy. The most important factor is to find someone you feel
you can trust and speak openly with. It is helpful to see a counsellor who has experience with cancer patients and who understands ovarian cancer as a disease whose causes are unknown. You should never be made to feel as though you, your past actions or anyone around you has caused your cancer.

Your GP or your cancer treatment centre can be useful starting points for a referral to the right counsellor or psychologist.

IMPACT OF COVID-19 PANDEMIC ON MENTAL HEALTHCARE

Studies are showing a worsening in mental health issues/ symptoms related to the COVID-19 pandemic. This has had a knock-on effect with the wait times for accessing psychology/ counselling services increasing. Not everyone can afford to self-fund, so many people may be left without the mental healthcare support and counselling services they need. Talk with your GP or specialist cancer medical team if you are having trouble getting the help you need.

STIGMA, DISCRIMINATION AROUND DEPRESSION AND ANXIETY

Stigma and discrimination around depression and anxiety are alive and real in society. Many people feel unable to talk about their depression and anxiety for fear of being judged by those close to them. People often say they fear others seeing them as weak or unable to cope. Sadly this can lead to feelings of shame, embarrassment and self-doubt. It can negatively impact a person who is suffering these illnesses by preventing a diagnosis and making them reluctant to seek help.

Standing up to any stigma attached to depression, anxiety and mental health illness is an important way to help yourself and support others who may also be suffering in silence.

Depression and anxiety are not a choice, and often alone we cannot control them. They are recognised illnesses like diabetes and heart disease and like those illnesses often need regular medical help and medication.

No two people experience depression and/or anxiety in exactly the same way. While it may seem obvious that one person is depressed, others can hide it well, and appear fine.

If you are suffering depression and/or anxiety related to your cancer or for other reasons, remember that you can:

• be successful and functioning at a high level and be depressed

• have a supportive family and friends and still feel depressed

• be any age and depressed

• have successful treatment for your cancer and still be depressed.

More information

Beyond Blue (beyondblue.com.au) has information about coping with depression and anxiety, including a depression symptom checklist and information about finding a counsellor. Call 1300 224 636 for non-urgent advice or to have information sent to you.

If you are having suicidal thoughts, call Lifeline Australia on 13 11 14. You may also want to call the suicide call back service on 1300 659 467. They can provide counselling sessions via phone or online (suicidecallbackservice.org.au).

13YARN is a free and confidential service run by Aboriginal and Torres Strait Islander people and is also available 24/7 by calling 13 92 76.

There are no silly questions. This is a new experience which many people describe as a whirlwind. If you’re not sure where to turn, it can be helpful to give the Support Team at Ovarian Cancer Australia a call. We can provide you with reliable, easy-to-understand written resources, ways to connect with other people with a diagnosis, or just an ‘ear’ to talk to about your experience.

Spirituality is about your personal sense of purpose and peace, and your beliefs about the meaning of life.

There are different ways to express your spirituality. For many, it is through their connection with other people, with nature, and possibly with a higher power. For some people, organised religion provides a way to express spirituality.

It is normal for a diagnosis of cancer to both intensify and cause upheaval in your spiritual life.

• You may feel angry and betrayed by life, fate or a higher power – and you may doubt or question your previous beliefs.

• Your faith may be a great source of comfort and give you strength.

• You may become aware of spiritual matters and feel the need to explore these more deeply or perhaps for the first time.

You may want to talk to a chaplain, minister, priest, rabbi, imam or other religious leader. Or you may want to explore your own ways of connecting more deeply with others and the world. This may include spending more time in nature, appreciating art and music, reading more widely about spiritual ideas, meditating, or writing in a journal.

Mental, physical and spiritual health is an integral part of staying well. I may not have the discipline to stick to it daily but I am conscious of it.

Sexuality is not just about having sexual interactions with others or about how often you have sex. You are a sexual being in your own right and your sexuality is not based on being in a relationship.

Sexuality is largely about the way people express and feel about themselves sexually. It relates to the emotional, spiritual and physical sexual feelings, thoughts, attractions and behaviours you may have towards other people and within yourself. Body image and self-esteem also play a key role.

You can express your sexuality in many ways:

• hugging

• kissing

• holding hands

• body language and eye contact

• listening to and sharing views with someone

• the intimate expression of sex (hugging, kissing, holding hands, massage)

• physical sex (masturbation, foreplay, penetrative or oral sex)

• thinking about sex and sensuality massage

• clothing you wear

• how you style your hair and makeup

• the ways you walk, speak and move.

With so many things happening to your body – scars, hair loss, night sweats, aches and pains – I think they can usually sense that sex is not high on the agenda! Hopefully they understand that it is a physical condition, not a personal situation. Maybe hugs and cuddles, but nothing more; that was how it was for me anyway!

Sexuality is about your overall sexual health and wellbeing. Caring for your sexual self as much as you do your physical, emotional, mental and spiritual health is important. Your sexuality can also be influenced by your culture and society.

HOW OVARIAN CANCER MAY AFFECT YOUR SEXUALITY

Treatment for ovarian cancer includes:

• surgery

• chemotherapy

• radiotherapy

• biological therapies.

These treatments and their side effects can affect your sexuality, sexual desire, body image and relationships with others, whether you have a partner or not. It is difficult to predict the exact changes for each person.

You may feel a wide range of emotions about sexuality, body image and relationships during and after cancer treatment. Many can be overwhelming, and you may wonder if you will ever feel sexy, attractive and energetic again.

• If your surgery has resulted in menopause, hormonal changes can lower your libido (desire for sex) and cause vaginal dryness.

• Having reproductive organs removed or not being able to have children can leave some people feeling a great sense of loss, or feel they are no longer complete as a person.

• Feeling unwell, feeling physically and emotionally tired, coping with the nausea and fatigue of chemo, feeling depressed or anxious, being in pain – can all reduce your interest in and desire for being intimate (talking, cuddling, as well as having sex).

• Body changes, scarring, hair loss and other physical changes may make you feel less attractive. You may not want anyone to touch you or talk about your physical appearance.

If you are not currently in a relationship, you may be worried about how a future partner will react to your illness, your feelings and your body.

WHAT CAN HELP?

Understanding these changes, communicating about them openly and finding ways to ease anxiety can help you feel better.

Communicating openly about our sexuality can be difficult, but it can be so important. Tell your partner how you feel. You may be worried having sex again will hurt or that you are no longer attractive. Voicing these concerns allows you both to do something about them. Sometimes not communicating your feelings clearly to each other can lead one person to make untrue assumptions. For example, a partner may avoid or no longer initiate intimacy, such as cuddling, kissing, talking or sex, because they are trying to be sensitive to the other’s needs. This may be interpreted as feeling you are no longer attractive to your partner.

Ask your partner how they feel. They may also be worried about being intimate. They may have concerns about upsetting you emotionally or physically hurting you. They might also be feeling they should not be thinking about being intimate when you are sick, that they may ‘catch’ cancer, or they may be affected by your chemotherapy.

Here are some things that may help.

• Plan intimacy for times when you think you will have the most energy. You might like to make a ‘date’ with your partner, which can be a fun way to build an emotional connection or sexual arousal.

• There are many different ways of being intimate and enjoying physical closeness: touching, stroking, cuddling, kissing, massaging or simply holding each other can be satisfying additions to or alternatives to sex.

• Take it slowly and use creativity to work out what feels good. Any problems usually get better with time and practice.

• Learning about how your body works, feels and responds to touch and sexual intimacy may help you feel more comfortable and confident having intimate relationships. This may be especially true for someone who has had ovarian cancer and its treatment. Masturbation, using sex toys and other aids can be good ways to explore your own body.

• Vaginal moisturisers and water-based lubricants relieve dryness and help to make sexual activity more comfortable.

• Ask your doctor whether hormone therapy might be a suitable option for you as it may help improve your libido, vaginal dryness and other symptoms resulting from surgical menopause.

• Talk to a counsellor, sex therapist, sexologist or a doctor with specialist training in sexuality and cancer. See ‘More information’ for details.

After my operation I approached my next sexual relationship with extreme embarrassment – but more importantly, real fear about sexual ability. I had not dared discuss the implications with my doctors at the time of my operation. Better communication skills on the part of both doctor and patient would perhaps have allayed my fears in the first place.

MORE INFORMATION

Some public hospitals have sexual health clinics, and it may be helpful to explore what is available through public hospitals in your area.

Some psychologists specialise in sexual health. Ask your GP about writing you a mental health plan, which will enable you to see a psychologist and be eligible for a Medicare rebate for up to 10 sessions per year.

You can also find your own counsellor/psychologist/sex therapist from the following organisations. But you will have to pay for the sessions. If you have private health cover you may be able to claim some of it back.

• Australian Psychological Society (psychology.org.au or 1800 333 497)

• ASSERT NSW (assertnsw.org.au) can provide details of sex therapists in all states

• Society of Australian Sexologists (societyaustraliansexologists.org.au)

• Relationships Australia (relationships.org.au) can also provide sexual counselling.

  Many sex therapists provide services via phone or Skype.

Have date nights! It was great for us to go out like a normal couple and enjoy a different environment out of the home. Great for me because it took my mind off things and it was a time for my husband to unwind as well.

Rebuilding your body image is an important part of your emotional and sexual healing. How you feel about your body and yourself affects your confidence, your sense of attractiveness and your sexual desire. Look Good ... Feel Better can help put you back in touch with your body, raise your self- esteem and improve your overall sense of wellbeing.

I feel Look Good Feel Better is such an uplifting experience, in that it makes you feel attractive again, I would give this a much bigger profile. The effect it had on me after losing my hair was mind blowing and I would like to see every patient being encouraged to attend a session.

WARNING: This section contains material that is sometimes confronting and disturbing. Sometimes words or images can cause sadness or distress, or trigger traumatic memories for people, particularly survivors of past abuse, violence or childhood trauma.

For some people, these responses can be overwhelming, so skip this section if you need to. If you need to talk to someone, support is available, and we provide details at the end of the section.

Domestic violence can have a significant effect on the health outcomes, treatment decisions and care for someone during and after ovarian cancer. Domestic violence is the most common form of violence against women worldwide and women with cancer are at risk as well. The abuser may not be your intimate partner, but another family member or other person you live with.

The abuse can come in several forms and survivors/victims may suffer one or more of any of the following.

• Physical: Physical abuse may come in the form of hitting, biting, scratching, pushing, slapping, kicking, choking, using weapons or objects to harm you. It may or may not cause bruises, abrasions, cuts or scarring.

• Sexual: Any form of unwanted sexual activity, with the perpetrator using force, emotional tactics, making threats or taking advantage of the survivor/victim not able to or wanting to give consent to the sexual activity.

• Emotional/psychological: Any kind of abuse that is emotional or mental rather than physical in nature. This may include verbal abuse, shouting, constant criticism
  or using more subtle tactics, such as intimidation, manipulation, humiliation and refusal to ever seem grateful. Emotional abuse isn’t always verbal; it can be enacted through behaviours.

• Financial: Controlling a survivor/victim’s ability to gain, use and maintain their money and financial resources.

• Coercive control: This can include gaslighting (where a person or group of people makes someone question their sanity, perception of reality or memories), controlling how someone looks or what they eat, isolating the survivor/victim from family and friends, monitoring a partner’s activities, and jealousy and possessiveness.

Although statistics surrounding domestic violence are hard to establish due to underreporting, it is known that women, children and trans people are at increased risk.

Additionally, when someone is being abused, and has cancer, they may suffer even more complications. For example, the person with cancer may be relying on the abuser for help with activities of daily living (showering, eating), medications, financial needs and transport to appointments. This allows the abuser to feel more in control and powerful, leaving the person with cancer feeling more frightened or unable to change their situation.

If you (or someone else) are in danger, or if you have been threatened, physically hurt or sexually assaulted, call triple zero (000).

Ovarian cancer affects everyone in the family as well as your network of close friends – and they may all react differently. The people closest to you may experience a range of emotions similar to yours, including anger, sadness, denial, fear, anxiety, guilt, loneliness and simply feeling overwhelmed.

The people close to you have the challenge of wanting to be strong for you while dealing with their own sense of shock. Some relationships will become stronger through the challenges you face. Value these relationships and the closeness you can enjoy together. Other people may not be able to cope, and you may grow apart from these friends.

For some people, there is a period of adjustment where they don’t know the right things to say or do. As they adjust to your news, they may want to reach out and help.

Communicate as honestly and openly as you can so your family and friends know how you are feeling and what you need. When you lead the way, others realise they also have permission to share their feelings and needs.

Also see Chapter 4: Support.

When a parent or grandparent has cancer, children often guess something is wrong, even if they’re not quite sure what it is. It’s a natural instinct to want to protect children of any age from upsetting news. But by talking to children as soon as possible, you will help to allay many of their fears and help them to cope better.

If you don’t feel able to tell your children by yourself, you may like to ask your partner, a grandparent or another loving relative or friend to help.

How much you tell your children will depend on their age, but all children need to know the following.

• They did not cause your cancer and they can’t make it go away.

• Cancer is not contagious: they cannot catch it by touching you or being close to you.

• You are going to have treatment and your doctors are going to do everything they can to help you get well.

• It is ‘normal’ to have side effects from treatment – like feeling tired and losing your hair.

• Life at home will be different, but they will always be cared for and you will always love them.

Encourage your children to ask questions and then do your best to answer them simply and honestly. Tell your children how you are feeling and encourage them to express their own feelings and concerns.

As time goes on, new questions, situations and feelings will arise. Keep your children updated on what’s happening, even if they don’t ask.

If you are worried about your children and how they are coping, talk to your doctor or a social worker in your treatment team. There are many different types of trained counsellors who can help.

CanTeen is an online service for young people whose lives have been affected by cancer. CanTeen has produced a helpful booklet ‘Now what? Dealing with your parent’s cancer’ and have a counselling service for young people aged 12 to 24 who have a mum or dad with cancer. The service allows young people to talk to a professional face to face, online or over the phone.

For more information about children and teenagers see Chapter 4: Support.

Many people go through a mixture of good and bad feelings after their treatment is over. You may feel relief and happiness. But it isn’t unusual to also feel frightened and lost, especially during the first few months.

You no longer have the regular attention and support from your nurses and doctors. Your family and friends may not visit as much. You may get the feeling those around you think you are feeling okay. Many cancer survivors say they feel lonely and angry about this. Yet they also feel they should be able to cope now treatment is over. It can be a confusing time and it is very natural to have concerns about your future and how you will cope.

Like many cancer survivors, you may feel:

• isolated, alone and abandoned

• unsure about your relationships and people who do not understand how you feel

• fearful your cancer will come back

• anxious about follow-up appointments

• worried about long-term side effects and how these may affect your work, social life, relationships and hobbies

• angry, frustrated and lacking in confidence about your body, sexuality and general health

• ‘survivor’s guilt’ – feeling guilty you are still here while others are not.

RETURNING TO A ‘NORMAL’ LIFE

Many cancer survivors find it difficult to get back to normal day-to-day life after their treatment finishes. Some say it never happens and life can’t return to how it was before their diagnosis. However, people say they adjust and create a ‘new normal’ for them. Sometimes people say their cancer changed their life for the better. It is a process of evolution – evolving as a different person.

One of the hardest parts about coping with ovarian cancer has been trying to live a normal life at the same time as living with the unknown. I’ve got through the treatment by researching and applying strategies to help me rebuild my energy levels.

While not everyone will have difficulty after treatment finishes, many say their fears won’t go away. You will need a lot of support during this time. Whether you are returning to work or study, or your full time ‘parent’ duties again, it is likely to take time to adapt. Be kind to yourself and don’t expect to feel good about everything straight away. Give yourself time to adjust and accept the ‘new normal’.

MORE INFORMATION

• The Cancer Council’s ‘Cancer, work and you’ (13 11 20, cancer.org.au).

• Work after Cancer (workaftercancer.com.au) has advice for people diagnosed with cancer, their loved ones, clinicians and employers about their options, rights and responsibilities.

• Cancer and Careers (US) (cancerandcareers.org) is for working women with cancer and includes supportive information and interactive tools.

• How do I manage difficult conversations at work? is a webinar on the Cancer Council NSW website, cancercouncil.com.au

I had difficulty concentrating and retaining information when I went back to study. I used to be very organised and not have to write things down but now I have to write everything down. Everything is different now. I have to arrange my follow-up appointments around my uni classes. It can be frustrating.

FOLLOW-UP

Follow-up refers to the checks and tests that you will have regularly once your treatment has finished.

When treatment ends, you may receive a treatment summary and follow-up plan from your specialist, GP or other members of your healthcare team. This may be called a ‘treatment plan’ or ‘survivorship care plan’.

WHAT IS INCLUDED IN YOUR TREATMENT PLAN / SURVIVORSHIP CARE PLAN

• Your diagnosis and the tests used to form the diagnosis

• Information about the tumour

• A treatment summary

• Current toxicities

• Treatment plans from healthcare team members

• Potential longer term / late effects and how these will be prevented or treated

• Information about supportive care based on a needs assessment

• A wellness plan with wellbeing and rehabilitation recommendations (such as goals around maintaining a healthy weight, the barriers you might encounter and strategies to address these)

• Preventive health recommendations relevant to your situation

• Contact information for key members of your healthcare team

• Things that will trigger a review of the plan (such as recurrence)

• How you will quickly access care if needed (including rapid re-entry into hospital system).

You may want to contribute to the plan, and you can ask about developing a survivorship care plan with your specialist, your GP, a specialist nurse or another member of your healthcare team.

A survivorship care plan includes your treatment plan and follow-up schedule (tests required and when they should be done) but also includes other information you may find helpful.

The plan may be updated if your health needs change. Things that will trigger a change in the plan include longer term / late effects requiring treatment, cancer recurrence or a change in your wellbeing goals and rehabilitation plans.

COORDINATION OF FOLLOW-UP

Some people will have most reviews with their GP. For others, your specialist will do a lot of your follow-up care and often there is a combination of both. Talk to those involved with your treatment such as GP, surgeon, medical oncologist and specialist nurses to plan. But the treatment plan will initially be agreed upon by you, your GP and specialist.

People who have been treated for ovarian cancer require certainty about who they should contact if they experience symptoms. People naturally are concerned about any symptom that may indicate the cancer has come back. A good follow-up plan will include this sort of information. A survivorship care plan developed with your specialist, GP or a nurse will detail which symptoms can be checked by a GP and which require hospital care.

See Chapter 4: Support for more information.

A good rule of thumb is to report any new, unusual, worrying or persistent symptoms to your doctor. Refer to the box in ‘Symptoms and signs to be aware of’.

Follow-up schedule

The follow-up schedule outlines what tests and appointments you will need in the future. These will depend on your own cancer – its stage and the treatments you have received. The follow-up schedule may look something like the example in Table 8.

Table 8: An example follow-up schedule

NOTE: This is an example. Your follow-up plan may be different.

Your follow-up appointments may make you anxious. They can also be reassuring. It is also an opportunity to ask questions of your specialist.

TIPS ON COPING WITH CHECK-UPS

Many cancer survivors say they begin to feel very anxious before their routine check-ups. You may find you do not sleep, eat or cope well in the few days/weeks before the appointment.

You may feel worried about returning to the hospital, have bad memories of treatment, or fear recurrence. Trying to find ways to manage your feelings is important. The following tips may help.

• Take someone you trust to check-ups for support.

• Make a day of it and do something nice after your

  appointment (lunch, movie) – add a positive touch to the day.

• Try to see the check-up as a way of caring for yourself and increasing your chance of getting treatment early if problems arise.

• Try to make the appointment for first thing in the morning so you do not have the whole day to worry.

• Prepare for your follow-up appointment. Get the most out of the appointment – make a list of questions to ask.

• Some people find relaxation techniques such as meditation can help calm them before an appointment.

Tests are only tools and living by test results can be difficult. You may feel fantastic but the tests tell you differently and it is very hard to live with. It is hard to keep their influence in proportion. They are only one indicator of your health and need the interpretation of a health professional.

Feeling anxious and frightened about ovarian cancer spreading further through your body (progressing) or coming back (recurrence) after it has been treated are common for most people diagnosed with ovarian cancer.

You may worry about what will happen if your treatment needs to change or whether there will there be treatment options available to you if your cancer comes back or spreads. These anxieties or fears are known as:

• fear of cancer progression

• fear of recurrence.

FEAR OF CANCER PROGRESSION

If you have a late or advanced-stage ovarian cancer you may think about what will happen if your cancer keeps spreading (metastasises). While metastatic ovarian cancer may not go away completely, there are treatments that can control it for a long time. We discuss these in Chapter 2: Treatment. If one treatment stops working, there is likely to be another option to try. New treatments are being developed and tested all the time for ovarian cancer patients. So always hold hope as there are ways to help manage cancer that has spread, even if the fear of cancer progression does not seem to go away.

FEAR OF YOUR CANCER COMING BACK (RECURRENCE)

If you have early-stage ovarian cancer, you may worry about your cancer coming back (recurring). Fear of a recurrence is one of the most common things people who have had cancer worry about. It is especially worrying in the first few months after treatment finishes. For some people, the fear is so strong that day-to-day life becomes a struggle. With time, the fear does lessen, but many say it never completely goes.

Knowing how likely it is the cancer will come back depends on several factors, such as the type of cancer, the stage and grade of the original cancer, and which treatments you had. Your doctor is the best person to talk with as they know your individual situation best. They will be able to let you know what symptoms to watch out for and report.

HOW TO COPE WITH FEAR OF RECURRENCE

• Be aware of any new symptoms and seek medical help.

• Take steps to minimise anxiety.

• Do your best to accept uncertainty.

• Focus on wellness and ways to stay positive.

• Take control of what you can and leave what you can’t.

• Write down your worries and only allow yourself to think about them at a specific designated time (known as ‘a worry time’).

Don’t be afraid to ask for help and get support.

Further resources at our website can assist in addressing fear and worry about cancer progression and recurrence.

It is hard not to worry before follow-up appointments – they remind you of everything that happened in the past and you always think: ‘What if ...?’

Instead of fighting the possibility that cancer may return, I have accepted the notion. I hope that I am better equipped to deal with it should it return. I feel more in control over a situation in which I have little control.

WHEN CANCER COMES BACK

If your cancer does come back (recur), there are new decisions for you to make about your treatment and ongoing care. Draw on the people, practices and beliefs that gave you strength in the earlier part of your journey – and use every day to look for new sources of strength and joy.

When ovarian cancer recurs it is increasingly being seen and treated as a chronic illness. The cancer may recur a number of times and can be treated and stabilised – and there may be long periods in between where no treatment is necessary. While a cure may not be possible, it does mean you can live for an extended time with a good quality of life.

HOW WILL I KNOW IF THE CANCER HAS COME BACK?

You and your doctor may suspect your cancer has come back if you begin to experience symptoms similar to those when you were first diagnosed. Or you may notice other changes in your health. Always tell your doctor about any new symptoms or symptoms that have returned.

Your doctor may also suspect your cancer has come
back based on changes found in your follow-up physical examination, or if your CA125 level has been rising. (See Chapter 2: Treatment, section titled ‘Follow-up care’ for more about rising CA125 levels.) Some people may have signs the cancer has come back even though their CA125 isn’t rising.

If tests or symptoms suggest your cancer has recurred, it may then be confirmed by an ultrasound or CT scan. Always report any changes or symptoms you have to your doctor. They may not mean your cancer has come back but it is best to check. See Chapter 2: Treatment for information about treatment for recurrent cancer.

Many people say finding out their cancer has come back is more stressful than their initial diagnosis. Ask for all the support you need at this time. You may want a family member or close friend to come to appointments with you, and this may be a time when you need to talk to someone such as a counsellor or psychologist who can provide you with extra emotional support.

After the initial shock of being told I had a recurrence, it was important for my family and I to know what my options for treatment were and the consequences of these treatments. Understanding your options gives you a sense of some control of your disease, which can alleviate some of the uncertainties and fears.

PSYCHOSOCIAL CONSIDERATIONS

After any serious illness, people may be faced with practical problems. Many people with cancer decide they want to organise their financial matters, such as insurance and superannuation. Others are keen to organise their Will, enduring power of attorney, enduring guardian, and state their wishes about future medical care if they become unable to make decisions for themselves (an advance care plan). This section briefly discusses these issues and suggests where you can get further help and support along the way.

Taking care of practical matters such as organising an advance care plan and preparing your Will ensures others know about and can act on your wishes. This can also relieve your partner or other family members from making difficult decisions on your behalf, knowing that they are acting in accordance with your stated wishes.

It is best if you can organise these documents while you are relatively well. They may not be used for some time but having them prepared can avoid future anxiety and remove any legal questions arising about your wishes. Think of these documents as a form of ongoing communication with the people you love and with your healthcare team. You can make changes to these documents at any time to reflect what is happening in your life.

INSURANCE, SUPERANNUATION AND LOANS

Getting life or travel insurance after you have a cancer diagnosis can be more difficult than usual. You will need to provide your medical history for many insurance policies. But there are people who can help guide you through this process to give you the best chance of getting the insurance you need. The Superannuation and Insurance Advice Service is a free service providing legal advice to people with disabilities.

Cancer Council Australia (13 11 20) has a Pro Bono Program for people who meet their eligibility criteria and means test. They help people affected by cancer gain access to free legal, financial, small business accounting and workplace assistance.

ADVANCE CARE PLANNING

Many people, whether they are ill or not, find it reassuring to have an advance care plan. An advance care plan allows you to write down your wishes for treatment in the event that you cannot make your own decisions.

Guidelines and rules around advance care planning differ for each state and territory. You can find more information about advance care planning in your state/territory online.

Give a copy of your advance care plan to your healthcare team and any family members you think need it and keep a copy in your medical file. Your medical file should also be marked to say it contains this document.

I have done an advance care plan and my daughter has a copy of it, as does my son. It was important for me to do this now whilst I am still well so my family know what I want.

ENDURING POWER OF ATTORNEY

An enduring power of attorney is a legal document that allows you to choose a trusted relative or friend to make decisions for you if you become unable to make decisions for yourself.

There are different types of enduring power of attorney. Depending on the state or territory in which you live, there may be separate enduring powers of attorney that you choose to take care of financial and legal decisions, or for medical treatment decisions. This may be called an ‘enduring guardianship’.

You can obtain information and advice about enduring powers of attorney from your solicitor, the Office of the Public Advocate, or community legal centres and services in your state or territory (search online) or through a social worker at your treatment centre.

Keep a copy of your Will, enduring power of attorney, advance care plan and other essential papers – such as your mortgage, bank accounts, investments, insurance and credit card details – in one place where they are easy for family members to access.

YOUR WILL

Your Will states who you would like to receive your possessions, money and property when you die.

If you have any special concerns about the custody or guardianship of children, it is important to talk to your family solicitor or ask a social worker at your treatment centre for help in accessing legal advice.

Your Will may also say who you wish to care for your pets and name any special items you want given to certain people. You may wish to include instructions for your funeral and burial in your Will.

If you do not write a Will, your estate will be divided according to law, which may not necessarily reflect your wishes.

Although you can buy Will kits from newsagencies and other outlets, a solicitor can better advise and assist you with preparing your Will or updating an existing Will.

SUPPORT

Life will be different following a diagnosis of ovarian cancer: the effects of the disease and its treatment can present all kinds of unique challenges.

Many people and organisations can provide you and your family with information and support to make the journey a little easier: support groups and online forums provide friendship, inspiration and laughter, and other services can help with finances, meals, childcare and cleaning.

This chapter provides useful ideas and sources of information for people with ovarian cancer and those close to them. Make the most of everything these support systems can offer.

Twelve years on and the women in my support group remain amongst my dearest friends. You’ll recognise us if you see us out and about – we’re the women laughing and hugging each other, on the dance floor, or raising a glass while the rest of the world sits politely to the side wondering what
our secret is!

KEY SUPPORTS FOR THE PERSON WITH CANCER

YOUR OVARIAN CANCER SUPPORT NURSE

The Teal Support Program is a free telehealth outreach program with specialised ovarian cancer nurses supporting those with ovarian cancer and those close to them throughout their diagnosis, treatment and beyond.

SUPPORT GROUPS AND NETWORKS

Support groups provide people with ovarian cancer the opportunity to share their experiences, receive emotional support and be informed.

Many people feel they need to talk to someone who really understands their situation and ‘speaks the same language’. The right support group can provide you with this.

Support groups are important as I could not find anyone else who had ovarian cancer. At support groups you can speak to someone in the same situation as you.

WHAT IS A SUPPORT GROUP AND WHO CAN JOIN?

Support groups and networks come in many forms: in-person meetings, online forums, social media pages and telephone/ video chat groups. Some support groups are designed to cater for people with any type of cancer, but there are also specific ovarian cancer, gynaecological cancer and women’s cancer support groups. Groups may be run by a health professional or by someone who has lived with cancer.

Some groups are open to family and friends and there are groups specifically created for those caring for people with ovarian cancer. Contact the support group facilitator before attending a group if you are not sure. Find out what they offer and if you feel the group will meet your needs.

HOW CAN A SUPPORT GROUP HELP ME?

Support groups can increase your feelings of control and help you to feel less alone. Getting together, talking online or talking on the phone with a group of people in a similar situation can help you realise your responses are normal, and that many others are going through similar experiences. People who join a support group often say the group is a place where they can relax and laugh at themselves as well as helping each other out with practical tips. Many people have been surprised at how much strength they gain from being part of a support group.

Evidence shows you are less likely to suffer anxiety if you join a support group. It may help you feel less isolated and better able to cope with cancer and its side effects. Many people say that it is not just about what they receive from those in the support group, but how good it can make you feel to give back too.

Many people with ovarian cancer also benefit from one-on- one support from a health professional to deal with the huge emotional impact of their illness. Chapter 3: Staying well includes information about accessing counselling services.

LIVING IN A RURAL OR REGIONAL COMMUNITY

If you live in a rural or regional community and have ovarian cancer, your physical distance from treatment centres and support services can become another hurdle to overcome. Many people need to travel to a metropolitan area for treatment or ongoing care, and this can place an added burden on them and their family: physically, emotionally and financially. Services can help in different ways, such as with transport or counselling. Always let your GP or social worker know if you are having difficulty accessing the services you need.

TELE-SUPPORT GROUP

Ovarian Cancer Australia (1300 660 334) holds monthly tele-support groups. These are online groups that you can join via video or phone. The groups are like a teleconference. Many say that they help to reduce feelings of isolation and distress if they are not able to access face-to-face support groups.

Facilitated by health professionals, tele-support groups provide an opportunity for people to connect with others experiencing a similar situation, gain information about diagnosis and treatment, and learn about other support options. The service is accessible anywhere in Australia; all you need is access to a telephone.

The best thing I did was to join a support group. They understood what I was going through, acted as a network for further information, gave me a new way to think about issues, cheered my successes and held my hand when I was down.

If I didn’t have the tele-support group, I would feel very isolated. The facilitators always get back to us with answers to our questions.

ONLINE SUPPORT

Online support groups, forums and social media pages provide a convenient way for those with ovarian cancer, their family, friends and carers to connect with others who are going through similar experiences. There is usually someone you can chat to online at any time of the day or night. Online support can be especially helpful if you live in a rural or regional area, or you find it hard to travel to a face- to-face group.

Remember, not all the information you get from online groups may be accurate or suitable for you. Be sure to talk to your healthcare team about new information you come across such as treatment suggestions. Refer to Table 9.

Just knowing there is hope and women who understand, truly understand, is just what I need

Table 9: Online support

Ovarian cancer has a huge impact on the practical day-to- day parts of your life. The need to prepare meals, pay bills, have clean clothes or care for children doesn’t go away when you have cancer.

Fortunately, many people and organisations can help. The next few pages will help you and your family access the practical support you need so that you can put more of your energy into your recovery and spending time with family and friends.

ACCEPTING HELP FROM FRIENDS AND FAMILY

When you accept offers of practical support, it helps your family and friends to feel useful and valuable, and it allows you to conserve your energy and focus on your recovery – usually everyone wins! However, it does not come easily to some people to accept or ask for help.

GETTING A HELPING ROSTER IN PLACE

Lotsa Helping Hands (lotsahelpinghands.com) lets you or a friend create a free, private group calendar to organise helpers who can pitch in with cooking meals, providing rides and other tasks during times of medical need, end-of-life caring, or when family caregivers need a break. Everyone who is invited into the private group can be informed with status updates, photo galleries and message boards.

Gather My Crew (gathermycrew.org) is an easy-to-use online tool that allows friends, family and colleagues to help others in need when and how they need help.

Even if a support service doesn’t sound useful, give it a try, you might be surprised. These support services are developed for a reason!

SUPPORT SERVICES

Many support services are available. It is often a matter of finding the right person or organisation to steer you towards the support services that will be helpful to you.

Your GP can help with many things such as creating a primary care plan for physiotherapy, podiatry, occupational therapy and exercise physiology. You can also ask for a mental health care plan through your GP for counselling and psychological help.

The types of support services available include:

• community or district nurses

• private nursing agencies

• home care nursing services

• volunteer respite care services.

Each service will provide different kinds of help. Some may have costs involved, while others will be free. If you have private health insurance, your policy may cover all or part of the fee. Your healthcare team can help you access these services, or you can search the internet for a specific service that suits your needs.

Help with meals, shopping and cleaning

Meals on Wheels (mealsonwheels.org.au) delivers meals during the week for a small charge for people who have difficulty preparing their own.

Other organisations sell frozen meals in bulk for you to use at times you are too tired to make a meal. Check online for availability in your local area or ask your healthcare team to help you locate a suitable service. Most supermarkets will deliver refrigerated and frozen meals, so use these services to keep your freezer stocked with ready meals.

My Aged Care (myagedcare.gov.au), for people over 65 years, may be able to offer advice about help with shopping, meals, and home cleaning and maintenance.

Help with children

Australian Government Child Care Access Hotline (1800 670 305) is a free telephone service to help you find a childcare service and can provide information on assistance in paying childcare fees. The hotline is available from 8 am to 9 pm Monday to Friday. Startingblocks.gov.au is an Australian Government website providing more information on childcare options and assistance.

Getting ovarian cancer is an expensive exercise – I found money just flew out the door like nobody’s business ... I still reflect on how much I have to be grateful for given
I live in a part of the country where I don’t need to leave my town to get treatment, and although I have family caring responsibilities, I don’t have financial worries on top of the medical issues I’m facing.

Money

Cancer can place a sudden and heavy burden on a person’s or family’s finances. It can mean lost income if you need to set paid work aside to focus on treatment and recovery. It can mean extra costs – for medical appointments, follow-up tests (if not done in the public system) and things like transport, accommodation and childcare, depending on your situation. If you have a partner, they may choose or need to take time away from work to care for you. So, there can be a significant financial toll. This is sometimes called ‘financial toxicity’ – the financial side effects of cancer.

There are some avenues of support available for financial concerns when you have cancer.

• You may be able to access some of your superannuation. Your fund can tell you about early release of money. You may also be eligible for disability or income protection insurance payments through your fund.

• The social worker at the hospital where you were treated can advise if you are eligible for financial assistance or help with transport costs.

• A financial counsellor can help with managing finances.

• Your partner or carer may be eligible for paid carers leave.

• Your carer may be eligible for Centrelink carer payments.

• You may be able to delay payment of some bills. Look into concessions, payment relief or rebates.

• The National Debt Helpline can help with free financial counselling.

Help with medical expenses

Members of your healthcare team, Centrelink or a community social worker can help with information about the financial benefits available to you and your carers, as well as eligibility and assistance with claims. They can also give you information about any out-of-pocket expenses for tests, surgery, your hospital stays and medicines. These costs will vary depending on whether you are a public or private patient.

Several government programs can assist with medical expenses.

• The Medicare Safety Net is designed to help people who have a lot of medical expenses. Once you have spent a certain amount for non-hospital medical costs in a calendar year (the safety net threshold), you may then be eligible to receive a higher rebate from Medicare for future medical costs. This means you pay less for medical visits and tests for the rest of the year. Individuals do not need to register for the Medicare Safety Net but couples and families do. Visit medicare.gov.au or call 13 20 11 to find out more.

• The PBS Safety Net helps with the cost of prescription medicines if you or your family need a lot of medicines in a year. Once you or your family reach the safety net threshold, you can apply for a PBS Safety Net card – then your PBS medicine will be less expensive or free for the rest of the calendar year. Ask your pharmacist for the PBS Safety Net Prescription Record Form or contact the PBS information line on 1800 020 613. You can also find out more at medicare.gov.au

Centrelink and other financial benefits

• Centrelink (centrelink.gov.au or 13 2717) can provide information about your financial entitlements, as well as providing a number of allowances (financial support) for people who are unable to work or need extra help due to illness. You may be entitled to a Health Care Card if you are a low-income earner. A Health Care Card entitles you to cheaper prescription medicines under the PBS and concessions on services such as ambulance, dental and eye care.

• If you are a carer, you may be eligible for a carer’s allowance payment. See the information for carers at the end of this chapter to learn more.

• Ask your manager, supervisor or human resources person what benefits may be available to help you, such as sick leave or other entitlements. You may like to verify your employer’s advice through your trade union, a professional association or a solicitor. Income protection, trauma, disability or life insurance, and superannuation can often be accessed during times of serious illness. A recent change to superannuation legislation enables people with a terminal illness to access superannuation funds without incurring tax penalties. You will need to talk to your fund provider about accessing these funds.

• Australian Prudential Regulation Authority (apra.gov.au or call 1300 558 849) is a useful source of information about superannuation entitlements.

• Cancer Council 13 11 20 can offer advice about financial assistance available to you.

• You may wish to organise an enduring power of attorney or guardianship – a legal document that allows you to choose a trusted relative or friend to make legal and financial decisions for you if you become unable to do this yourself. Please see ‘Practical matters’ in Chapter 3: Staying well.

If you don’t feel up to dealing with medical bills and claim forms, ask a family member or friend to help you. You can also contact Medicare and your private health insurer for a summary of benefits they have paid you during the financial year.

Other useful contacts

• Angel Flight (angelflight.org.au) is for people in financial need who need to travel to medical facilities. All flights are free and must be booked by a health professional. Ask your doctor or visit the Angel Flight site for more information.

• Telstra Priority Assistance 13 22 00 provides people living with cancer in a remote area with priority service to repair any faults on their telephone line (whether or not Telstra is their telephone provider).

When you need to travel to receive treatment or care, there are some simple, practical things you can do that can help.

• If possible, travel with a friend or family member and ask them to come with you into your appointments.

• Be prepared. Make sure you have all the documents you need, as well as appointment details and directions (use Google Maps for maps and directions).

• Take a notebook/electronic calendar/smartphone to jot down questions for your healthcare team (refer to Chapter 2: Treatment, ‘Questions to ask your healthcare team’).

• Keep in mind you may need to unexpectedly spend a night away from home if you are not well enough to travel home.

• Book your appointments to suit you and your family and to maximise the time you have at home.

• Talk to your family using free programs such as Skype, Viber, WhatsApp or Telegram Messenger.

• Many hospitals offer free wi-fi access.

TRAVEL AND ACCOMMODATION ASSISTANCE

Each state and territory have a scheme that can help towards the costs of your travel and accommodation when you need to travel to a metropolitan or regional centre for treatment. The eligibility requirements for financial assistance can vary, so please contact your local scheme below for more information. Cancer Council 13 11 20 can tell you more about the scheme in your area.

Where there is a central number for these schemes we have included them below, but in some states and territories, there are separate phone numbers for different regions. You will find these phone numbers on the following websites:

• New South Wales Isolated Patient Travel and Accommodation Assistance Scheme (health.nsw.gov.au, search for ‘IPTAAS’)

• Victorian Patient Transport Assistance Scheme (health.vic. gov.au, search for ‘VPTAS’)

• Queensland Patient Travel Subsidy Scheme (health.qld. gov.au, search for ‘PTSS’). The Integrated Patient Transport Unit can also provide information on 13 43 25 84

• SA Patient Assistance Transport Scheme (countryhealthsa. sa.gov.au, search for ‘PATS’ or call the PATS Central Office on 1800 188 115)

• Tasmanian Patient Travel Assistance Scheme (dhhs.tas.gov.au, search for ‘PTAS’)

• WA Patients’ Assisted Travel Scheme (wacountry.health. wa.gov.au, search for ‘PATS’)

• ACT Interstate Patient Travel Assistance Scheme (health. act.gov.au, search for ‘IPTAS’ or call 02 6205 3299)

• Northern Territory Patient Assistance Travel Scheme (health.nt.gov.au, search for ‘PATS’).

  Some health insurance companies cover some travel and accommodation expenses, depending on your plan. If you have private health insurance, check with your provider to see if you are covered for any travel and accommodation expenses.

If you or your carers do not speak English as their first language there are several services that can help you to access information and support in a range of languages. This can be a big help in understanding information from your doctor and in feeling less alone.

• Translating and Interpreting Service (TIS) National
  (13 14 50) offers free telephone interpreting services all day, every day. You can call this number to contact many government, non-profit, community and medical services free of charge through an interpreter. (Services that you can contact include Ovarian Cancer Australia’s Support and Information Helpline 1300 660 334 and Cancer Council 13 11 20.) When you call TIS National, you tell the operator which language you speak and give them the name
  and phone number of the service you wish to contact. The interpreter and staff from Ovarian Cancer Australia (or another service you have called) will then talk to you together on the same line.

• If you need an interpreter to attend a doctor’s appointment or need medical information translated, a member of your healthcare team can organise this for you. Interpreters need to be booked in advance. There usually isn’t any cost for this service (but always check to be sure).

• Cancer Council 13 11 20 (cancer.org.au) may be able to suggest other information and support in your language – including support groups, talking to someone else with cancer, telephone counselling and cancer education programs. The Cancer Council also has information translated into a range of community languages.

• Palliative Care Victoria (pallcarevic.asn.au) has bilingual brochures about palliative care in a range of community languages. The translated section of each brochure is also available online as an audio file.

ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLE

If you are an Aboriginal and Torres Strait Islander person you may find it difficult to talk about cancer and can feel worried and isolated. It is important to know there are culturally appropriate people you can talk to who can help, and that

it is okay for you and your family to ask questions.

You can talk to an Aboriginal health worker or liaison officer at your treatment centre about your concerns and how you are feeling. An Aboriginal health worker or interpreter can explain things in your language for you and your family and support you during your visits to the hospital. Aboriginal health workers, liaison officers and interpreters work in hospitals, treatment centres and clinics.

• Cancer Council NSW (cancercouncil.com.au or call
  13 11 20) has a range of information about cancer written for Aboriginal and Torres Strait Islander people.

• ‘Aboriginal cancer journeys: Our stories of kinship, hope and survival’ is a book of stories from Aboriginal people affected by cancer (healthinfonet.ecu.edu.au). It includes personal insights and words of wisdom so Aboriginal people can get an insight into other people’s experience of cancer.

• Cancer Council NSW and the Aboriginal Health & Medical Research Council have written easy-to-read information about cancer, its treatment and side effects (cancercouncil. com.au/aboriginalcancer).

• Cancer Australia (canceraustralia.gov.au) has a booklet on lymphoedema and other issues around having cancer for Indigenous peoples.

• Our Mob and Cancer (ourmobandcancer.gov.au) developed for Aboriginal and Torres Strait Islander people by Aboriginal and Torres Strait Islander people in collaboration with Cancer Australia. Here you can find information about cancer, including cancer types, prevention, diagnosis, treatment living with cancer, finding support, clinical trials and much more.

• 13YARN is a free and confidential service run by Aboriginal and Torres Strait Islander people and is available 24/7 by calling 13 92 76 or visit 13yarn.org.au.

PEOPLE WHO ARE DEAF, HARD OF HEARING OR HAVE DIFFICULTY SPEAKING

Phone relay service

If you are deaf, hard of hearing or have difficulty speaking, you can call any phone number including organisations and services listed in this kit through the National Relay Service. You can use the internet, a telephone typewriter (TTY) or a regular phone (for people with speech impairment) to call the service.

• TTY users should call 13 36 77 for regular phone numbers or 1800 555 677 to call 1800 numbers.

• Speak and Listen users should call 1300 555 727 or 1800 555 727 to call 1800 numbers.

Interpreting service

National Interpreting and Communications Services

(nicss.org.au) provides sign language interpreting services to professional and government service providers and people who use sign language to communicate. You may wish to book an interpreter for appointments with your doctor or other health professionals. Ask your treating doctor or nurse about how to do this. Visit the website to book an interpreter and request prices.

This section has been written for family, friends and carers of people with ovarian cancer. People with ovarian cancer may want to read this section to get a better feeling for the issues facing family and friends and then pass it on to the people who are closest to them and helping to care for them.

When a family member or close friend has been diagnosed with ovarian cancer, it is the beginning of an intense journey that has no rules. It is a difficult and emotional time for the person who is diagnosed – and for those close to them. Finding out your mother, sister, daughter, partner, friend, aunt or grandmother has cancer can be overwhelming. You may be surprised by your own feelings and reactions. You may feel helpless or be worried you will say or do the wrong things.

How you cope with your family member’s or friend’s experience of ovarian cancer will depend partly on the type of relationship you had before they were sick and how you communicated in the past.

If you are the partner, parent, sibling or a child of someone with ovarian cancer, you may feel intense levels of distress when they are first diagnosed. Although these feelings tend to settle over time, you are likely to have periods where you are very worried, anxious, upset and frightened about the future. Roles within your family can often change, and this may often involve a great deal of adjustment for everyone.

If you are a friend of someone with ovarian cancer, it can be difficult to know where you fit in: you may also have strong emotions, but other people may be less aware of this. You may have concerns about how involved you should be – you may be worried you will ‘overstep your mark’, especially if your friend has close family members.

A partner, child (adult and younger), other family member, friend or neighbour may also be a person’s carer. This can be a very special and sometimes challenging role.

In this section, you will find information to help you support your family member or friend with ovarian cancer. There are also details of services to help to support your needs and concerns in this important role.

There are 4 main parts to this section – some or all of the information in each part may apply to you. Read through each to see what practical tips and sources of support you can find about:

• family relationships

• helping a family member or friend with ovarian cancer

• carers

• counselling and support services for family, friends and carers.

FAMILY RELATIONSHIPS

PARTNERS

As the partner of someone with ovarian cancer, you can have deep concerns about the person you love and at the same time, may need to take on new roles and extra responsibilities. You may feel you need to be the stronger person in the relationship. You may not believe your needs are as important as the person with cancer and may not seek out the support you need for yourself.

While your partner is having treatment and receiving support from members of the healthcare team, support group and wider support network, you may feel like a bystander. You may feel you can’t do as much as you would like to help your partner. This can be very difficult if you are often used to being supportive by ‘doing’ and find it harder to simply be there, to talk and to listen.

There are a few really important things to remember at this time.

The love, care and support you provide for your partner will be a vital part of their support network – don’t underestimate how much it means to them. If you were important to them before ovarian cancer, you are still important to them now – sometimes more so.

Your partner is on the journey with you. They are the ones who know most closely how lonely and difficult the road is. They lie beside you night after night when you only sleep an hour at a time. You need them and somehow you have to look after each other.

• Talk together. Open and honest communication goes a long way to help ease the stress cancer will have on your relationship. Tell each other how you are feeling. Try not to assume your partner knows how you feel or that you may offend or hurt your partner by being honest.

• Go to medical appointments together. This may help you feel more involved and help you to better understand the diagnosis and treatment. This will help you to know when and how to offer support. Going to support group meetings together is another way of providing support. Check if the group welcomes partners (some do).

• Talk about your changed roles within the family. While you are taking on new responsibilities, your partner is adjusting to being more dependent on you. Wherever possible, still involve them in household decision-making.

• Get support for yourself. Some couples find it helpful to see a counsellor, social worker or psychologist together. Caring for yourself when you are a carer is extremely important. You may want to make an appointment to talk to someone by yourself. Start by asking about counselling services available through your hospital or treatment centre or ask your GP for a referral. You can also call the Ovarian Cancer Australia Support and Information Helpline on 1300 660 334 or Cancer Council 13 11 20.

SAME-SEX COUPLES

If you are a same-sex couple, you may feel support services are not sensitive towards your relationship. A social worker at your treatment centre, the Cancer Council’s Cancer Connect program or specialised gay and lesbian support services may be able to give you the more specific support you need. You will find details of counselling and support services at the end of this section.

INTIMACY WITH YOUR PARTNER

Having ovarian cancer can change how someone feels about sex and being intimate. It can affect a person’s libido as well as changing how a woman’s body functions sexually.

As the partner of someone with ovarian cancer, you are most likely going to be affected as well. If your partner does not feel like being intimate or having sex, you may feel rejected. This can put a lot of stress on a relationship. Your partner may feel they are no longer attractive, or you are no longer attracted to them. Their body may not work in the same way as it used to.

They may be frightened of sharing their feelings with you. They may not want to hurt you by saying they are not yet ready to be intimate again. A person may worry that even a kiss or a cuddle will lead to having sex before they feel ready. Because of this they may avoid contact all together.

It is important to be as open as possible with your partner.
Let them know they are still attractive to you and there is no pressure to become physically intimate. Reassure them you are happy to just sit, hold hands and chat if that is all they want to do. If you both communicate your feelings, it will help build more trust and a deeper relationship.

See Chapter 3: Staying well for the section on ‘Intimacy and sexuality’ during cancer and its treatment.

I had to reframe things in my mind. This has been so important and helpful. I had to get out of the clinical/medical/ cancer treatment space and back into the sexual space.

MALE PARTNERS PROGRAM

This Ovarian Cancer Australia program supports men caring for partners with ovarian cancer. The emotional impact of caregiving can reduce overall wellbeing and quality of life. Intimacy and sexuality are also significant challenges and rank highly among unmet needs of male partners. View our webinar ‘The emotional impact of caring for a woman with ovarian cancer and issues of intimacy and sexuality’ (ovariancancer.net.au/page/219/ male-partners-program).

See the end of this section for more resources for male partners. You will find helpful information about looking after yourself under ‘Carers’, later in this chapter.

CHILDREN AND TEENAGERS

Children and teenagers feel and show the distress of their mother’s or grandmother’s ovarian cancer in different ways. How they react will depend on their age and gender, and the way family members communicated before mum/ grandmother was sick.

After a diagnosis of ovarian cancer, roles within a family will usually change and children, especially older children, often need to take on extra responsibilities.

Children may feel their needs are no longer as important and no-one understands how much they are hurting.

Just like adults, children have many different coping strategies. It is important to recognise this. Denial is one type of coping mechanism, although it may be mistaken for not coping.

Talking openly is really important so each family member knows where the others are at. Professional supports are available. There are family counsellors available at most hospitals and it can be very helpful to start the process of talking together as a family with a counsellor’s guidance. Speak to the child’s schoolteacher as well. They can provide extra support and monitor for signs of distress that the child may not express at home. Referral to the school counsellor may be helpful, especially if there are behavioural issues or if educational attainment is affected.

See the end of this section for more resources for children and teenagers.

FAMILY MEETINGS

Family meetings can be especially helpful if you feel everyone is not ‘on the same page’ about treatment options and plans and perhaps not receiving consistent messages from the healthcare team. They are a way of helping those with ovarian cancer and their family, friends and carers to communicate openly with members of the healthcare team. With a family meeting, everyone can hear and discuss issues first-hand and reduce the chance of misunderstanding. It can be very helpful to involve all members of the healthcare team in family meetings.

By far the most support I have received has been from my family (my 2 sisters and my father) and my dog, who, I am convinced, knows that I am unwell and consequently has become much cuddlier and more loving.

PARENTS AND SIBLINGS

When someone is diagnosed with cancer, particularly at a younger age, parents can worry or feel guilty that they are somehow responsible. For young women with ovarian cancer, parents can often still play a huge role in their care. They may even be the main support people. It can be difficult for young adults to accept this at a time in life when they may want to be independent.

Parents may also find it difficult as they will naturally want to take responsibility and protect their child. They may want to attend appointments with their child and play a part in the decision-making. Sometimes, the young adult may be happy and relieved for this to happen. But other times, they may want to attend appointments alone or with an age-appropriate person and not share everything with their parents. It is important that the person with cancer knows they are in control of how much their family is involved in their care.

Parents of a young adult with cancer may also be caring for other children. Siblings may feel left out or isolated as their parents focus on the child with cancer. It can be a difficult time for the whole family.

The young adult may also gain a lot of their support from their siblings. Siblings (younger and older) will have concerns about their sister but may not always know how to help.

It is important for all family members to communicate their feelings with each other and seek support if necessary. Call the Ovarian Cancer Australia Support and Information Helpline on 1300 660 334 for further information.

Finding out mum had ovarian cancer was gut-wrenching. I felt completely helpless and instantly went into denial.

EXTENDED FAMILY AND FRIENDS

A diagnosis of ovarian cancer will also have a significant impact on extended family, such as aunts, uncles, nieces and nephews, on close friends and on colleagues.

As a close friend or a member of the person’s extended family, it is important to:

• get support for yourself if you are feeling upset, angry or unsure how to cope

• realise how important you are to your friend with ovarian cancer – as a friend you can provide wonderful support, both emotional and practical. See the next section for ideas of the types of support you can offer

• talk openly with your friend. Don’t let ovarian cancer become the big subject you never talk about.

People who have lived with ovarian cancer have these suggestions for the types of practical and emotional support family and friends can offer:

• Keep in touch – this could be through phone calls, emails or visiting. It’s good to call and check how your family member or friend is feeling before you visit.

• Accompany them to treatment – offer to go to chemotherapy with them or make up a ‘chemo coping pack’ filled with treats (hand cream, chocolate, lollies, lip balm) and fun things they may like to do and read (crosswords, magazines, pack of cards).

• Many people find it hard to ask for and accept help, and you may not receive a reply to a general offer such as ‘Let me know if there’s anything I can do’. Suggest specific ways you can help. It may be cooking, help with transport, listening, taking their children on an outing or gardening. Keep up the offers of help throughout the period of treatment and beyond.

• During treatment, your friend with cancer may be more prone to infection so don’t visit when you are sick or if you have sick or noisy children with you. And always wash your hands well before you visit your friend.

It pays to spend time learning about ovarian cancer and its effects. Just remain open to information, have patience with what you, your family and mother will be about to experience.

• Help your friend to enjoy life. Your friend may feel as though everything in their world revolves around cancer and they will not need to talk about it all the time. Your friend may welcome a chance to go out for a meal, a walk, a weekend away, or just spend time with you over a coffee or glass of wine.

• If your friend needs to cry, don’t try to stop them, but sit with them so they know they are not alone.

• When they don’t need to talk about the cancer, bring some fun to their life by perhaps sharing a glass of wine and music, enjoying a lunch, or planning a weekend away.\

• If you are also the main caregiver for someone with ovarian cancer, see the ‘Carers’ information later in this chapter.

Carers of people with ovarian cancer play a very special and often challenging role. Each care situation is different, and a carer may be a partner, child, other family member, friend or neighbour.

In many cases, the carer is the person with cancer’s partner, and this can mean you are emotionally, physically, practically and financially involved and affected by what is happening in your partner’s life.

ACCESSING INFORMATION AND SUPPORT

Sometimes, carers don’t acknowledge their role because they consider it to be a natural part of loving someone with cancer. This can mean that they don’t acknowledge the stress of being a carer and don’t ask for help or support. It is just as important to look after yourself in this situation.

To be an effective carer, you need plenty of information. To assist in caring for your loved one, you may wish to gather lots of information and engage further support for yourself.

Many carers find support groups a useful tool, and some groups welcome family, friends and carers. There are also support groups specifically for carers. These groups are a great source of inspiration, information, empathy and comfort. See the beginning of this chapter for more information about finding support groups.

• Carers Australia (carersaustralia.com.au or 1800 242 636) works with carers’ associations in each state and territory to help improve the lives of carers. These associations provide counselling, advice, education and advocacy, and represent carers.

• Some carers are eligible for government benefits that can assist financially. Carer Payment can provide income support if you are unable to support yourself through substantial paid employment due to the demands of caring for someone on a daily basis who has a severe medical condition (such as ovarian cancer). This payment is means tested. Carer Allowance is a supplementary payment for carers made up of a smaller fortnightly payment and an annual supplement. Carer Allowance does not depend on income or assets, and has a generous income test, is not taxable and can be paid in addition to wages, Carer Payment or any other Centrelink payment. To apply find out more and to apply for either allowance call Centrelink on 13 2717 or visit centrelink.gov.au.

LOOKING AFTER YOURSELF

You will be much better able to care for someone else when you look after your own emotional and physical needs. Make sure you:

• talk to someone about your feelings

• get plenty of sleep

• eat a wide variety of fresh, healthy foods

• make time to be active

• take regular time out for yourself and do things you know you enjoy or did enjoy in the past – for example, gardening, going to the movies, spending time with friends

• are aware of signs of anxiety, depression and sleeping problems in yourself, and ask for help when you need it. Your GP, cancer nurse, social worker or a counsellor at your cancer treatment centre are good places to start. Or call Ovarian Cancer Australia on 1300 660 334 for further information and support.

Table 10: Useful contacts for carers

TIPS FOR CARERS

Here are some ways of listening and supporting that carers of people with ovarian cancer have found helpful:

• Listen. Don’t feel you have to offer solutions or ‘fix things’. Being there to listen and care is one of the most helpful things you can do.

• Be informed. Use this kit to find reliable and up-to-date information sources.

• If you go along to doctor’s appointments, help the person you are caring for to think about the questions they want to ask, and ask questions yourself. Listen carefully to what the doctor says and take notes.

• Involve the person you are caring for in shared activities you know you both have always enjoyed doing together such as going shopping, going to the movies, going for a walk, playing cards, talking and laughing. Also recognise there will be times when they want to be alone.

• Allow the person you are caring for to make their own decisions, accepting that they may be different from your own.

It is very difficult for your partner because they are grieving and shocked like you. You can’t expect them to respond in the exact way you would like. Often they just seem shell-shocked when you want them to say that you will survive, and you will be well again.

FOR ALL FAMILY MEMBERS AND FRIENDS

• Relationships Australia (relationships.org.au or
  1300 364 277) is a network of community-based, not-for- profit organisations providing relationship support services for individuals, families and communities.

• Cancer Council 13 11 20 Cancer Councils in each state and territory offer free, confidential telephone information and support, and can also organise specialised cancer counselling with a counsellor or psychologist at a subsidised cost. Counselling is available face to face and over the phone.

• Contact the Australian Psychological Society (psychology.org.au or 1800 333 497) to find a psychologist in your local area who has experience and skills in the particular area you need.

• Cancer Council NSW (cancercouncil.com.au) has information about genetic testing and family history of cancer.

• Cancer Council Queensland (cancerqld.org.au) has a webinar on coping with the emotional impacts of breast and gynaecological cancer.

• Cancer Council WA (cancerwa.asn.au) has information about familial aspects of ovarian cancer, as well as a presentation on ovarian cancer genetics and risk-reducing surgery.

• Cancer Council Victoria’s (cancervic.org.au) ‘Challenging choices’ webinar discusses issues arising from being a carrier of the BRCA1 and/or BRCA2 gene variant.

• Centre for Genetics Education (genetics.edu.au) has many excellent fact sheets relating to cancer in the family, gene mutations, genetic counselling, breast and ovarian cancer, and inherited predisposition.

You may also find the following international websites helpful:

• American Cancer Society (cancer.org)

• Cancer Research UK (cancerresearchuk.org).

If you would like information about dealing with the practical and emotional needs of having ovarian cancer, call Ovarian Cancer Australia on 1300 660 334. We can provide information about support groups and networks that can help you connect with other people in similar circumstances. We can also suggest how you can connect with counsellors and psychologists who specialise in helping people with cancer.

If you have continuous feelings of sadness, anxiety and fears relating to your cancer or your cancer coming back, we strongly advise you to seek medical help. Asking your specialist or GP for a referral to a counsellor or psychologist can help with managing your fears. You can also talk to your GP about a mental health care plan to receive Medicare-subsidised support from a psychologist or counsellor.

FOR MEN

• For more info about our Male Partners Program, please see information on page 204 earlier in this chapter

• MensLine Australia (mensline.org.au) offers a free 24-hour, 7-day phone and online counselling, information and referral service for men with family and relationship concerns.

• Australian Men’s Shed Association (mensshed.org or 1300 550 009) is a not-for-profit organisation that creates a safe and busy environment where men of any age can get together, work in the shed, learn some new skills and receive support when dealing with difficult situations, including their wife’s, partner’s, family member’s or friend’s ovarian cancer diagnosis. There are over 500 sheds registered throughout Australia so look on their website to find a shed near you.

FOR SAME-SEX COUPLES

• C Word is a telephone support group for same sex attracted women affected by cancer. Contact Cancer Council 13 11 20 for more information.

Be honest with your children. Don’t hide the truth to protect them; protect them by telling the truth. With older children, talk openly and honestly about the treatment and maybe take them along to an appointment.

FOR CHILDREN AND TEENAGERS

• Kids Helpline (kidshelp.com.au or 1800 55 1800) is a phone, web and counselling service available for young people aged 5 to 25. The service is free, private and confidential and available 24 hours a day, 7 days a week. Young people can choose to talk with a female or male counsellor and can chat about anything at all that is worrying them – big or small. The website also lists Parentline phone numbers in each state and territory that concerned parents can call.

• CanTeen (canteen.org.au) is an online service for young people whose lives have been affected by cancer. They also support and run programs for siblings and children.

• Australian Child & Adolescent Trauma, Loss & Grief Network (earlytraumagrief.anu.edu.au) offers support for positive and hopeful outcomes for young people and their families experiencing trauma, loss and grief.

• Reach Out (reachout.com) is an Australian website inspiring young people to help themselves through tough times by building skills and providing information, support and referrals.

You’ll find more resources for children and teenagers in Chapter 3: Staying well.

Learning your cancer is incurable usually comes as a huge shock, even if you were aware your cancer was progressing. You are likely to feel extremely upset and frightened about what might happen next. It is very normal to feel this way.

You may not want to, or ever need to, read this chapter. However, we include it for people who would like further information about coping with a cancer that won’t go away. Hopefully the information will reassure you there are several treatments and a lot of support available for those in the advanced stages of ovarian cancer.

IF YOUR CANCER WON’T GO AWAY

For some people with cancer, there may come a time when their cancer advances and it is no longer responding to treatment. Others may be given an initial diagnosis of advanced cancer, meaning the cancer is incurable. This can be very difficult to come to terms with. However, it doesn’t mean there won’t be treatment to help control your cancer or its symptoms.

The aim of treatment for incurable cancer is to provide care and support so people can live as fully and comfortably as possible. Your medical team call this type of care ‘palliative’ or ‘best supportive care’. While palliative care itself is not aimed at curing your cancer, it can be offered together with active treatment to help reduce your symptoms, give you a better quality of life, and provide you and your family or carers with emotional, spiritual and practical support.

Palliative care provides a nurturing support system of medical and allied health professionals to help people with advanced cancer and those close to them cope during a chronic or life limiting illness. The main aim of palliative care is to improve quality of life and provide symptom management for the person who is unwell and support those closest to them.

Life is truly precious and very unpredictable. It is important to be with those you love and to respect and embrace them and life.

Palliative care can be given at any stage during advanced cancer. It is important to remember people can live with advanced or incurable ovarian cancer for quite some time. The support can be provided in your home, in hospital or in a hospice setting. The services offered through palliative care differ depending on your individual needs.

Palliative care doctors and nurses are specialists in managing the troubling symptoms of cancer and side effects of treatment. Seeing a palliative care doctor or nurse is like seeing any other medical doctor.

There are many benefits in thinking about palliative care when you are still well. It is important you receive the opportunity
to be actively involved in and plan for your ongoing care. It
can provide practical psychological and medical comfort and support for people faced with an illness in its advanced stages.

Palliative care doesn’t mean that it is time to ‘give up’, but it is a way you can seek support and resources from people who know how to and want to improve your quality of life by caring for your physical, social and emotional needs.

HOW PALLIATIVE CARE CAN HELP ME AND THOSE CLOSE TO ME

A specialist palliative care service uses a team of health professionals to provide you and your family with care tailored for your needs. The team may include a specialist palliative care consultant, community nurse, social worker or counsellor, physiotherapist, occupational therapist, dietitian, pastoral care worker, and volunteers. Your palliative care team works together with members of your healthcare team, including your GP and cancer specialist.

Referral to a palliative care team can be made by medical staff while you are in hospital. Or you, your GP or a family member can make the referral. Depending on your needs, which will change over time, a palliative care service can provide you and those close to you with:

• management of pain and other difficult symptoms

• specialist nursing in the home, hospital or hospice setting

• nutritional care and support

• assessment of and practical help with daily living including equipment to help you manage at home

• emotional and spiritual support

• an understanding of the physical changes and symptoms you are experiencing and how to manage these, so you are more comfortable

• assistance with advance care planning

• grief and bereavement counselling.

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.

PAIN RELIEF

Many women worry about the pain they may have if their cancer advances. Palliative care teams are experts in pain relief, and, in almost all cases, pain can be controlled. There are many different pain management medicines available. Finding the right dose and combination often depends on the individual and the type of pain.

In addition to prescribing medication, your palliative care team may be able to suggest where you can access massage, acupuncture and relaxation techniques that can help with pain relief. Read about coping with cancer pain in Chapter 2: Treatment.

Some people with advanced cancer think that they have to put up with pain and discomfort or put off having their symptoms reviewed until they ‘really need it’. What we find is that relief from physical symptoms can reduce other stressors too, so don’t hesitate to ask for symptom relief.

PALLIATIVE CARE SERVICES

Palliative care services are provided in a range of places. Most are provided at home by a community-based palliative care service or a community nurse. Services are also provided in hospitals, outpatient clinics, and specialist inpatient palliative care units/hospices.

Palliative care inpatient units

A palliative care unit in a hospital is a place where specialist palliative care staff care for you in a home-like environment, but with all the benefits of hospital equipment and 24-hour nursing care.

These palliative care units can allow you to bring difficult symptoms under control and have 24-hour care. In some instances, people who do not want to die at home, or are not able to, will remain in a hospital or hospice for end-of-life care. Other people return home if they are able to manage their symptoms there. You may also go into a palliative care inpatient unit for a short time to give your carers a rest.

Community palliative care

Once a referral has been made to the community palliative care team, a palliative care nurse will come out and meet you and your family in your home. They will get to know you and assess your current needs. The nurse will explain what palliative care services may be useful to you. You, the nurse and palliative care doctor will then agree on a follow-up plan depending on what is happening for you. This could be a check-up visit once a fortnight, or regular follow-up phone calls or daily visits to help with difficult symptom control if you are very unwell. It is not unusual for some people to enter community palliative care for a period of time, and then come off the program again as symptoms are managed, re-engaging if the issues resurface. Community palliative care can also provide bereavement support to loved ones.

Palliative care in aged care

Sometimes palliative care may be provided in an aged care setting, and if this is the case community palliative care teams will provide consultation and support to the aged care team that are caring for the person.

Access and referral

Palliative care services are available and respectful to everyone with advanced cancer regardless of their culture, background, religion or belief system.

You can be referred to a palliative care service by any member of your healthcare team or by your carers, or you can make direct contact with your local service yourself. You will need a doctor’s referral to be admitted to an inpatient palliative care unit, and there are often criteria around admission times to these units.

The cost of palliative care services varies according to the type of service provided, but those provided in the public health system are generally free. Ask a member of your healthcare team about any costs involved and any rebates available from Medicare or your private health fund.

FINDING PALLIATIVE CARE SERVICES IN YOUR AREA

For a list of all palliative care facilities available in your area, visit Palliative Care Australia (palliativecare.org.au) or your state or territory palliative care organisation:

• New South Wales palliativecarensw.org.au

• Victoria pallcarevic.asn.au

• Queensland palliativecareqld.org.au

• Western Australia palliativecarewa.asn.au

• South Australia pallcare.asn.au

• Tasmania pallcaretas.org.au

• Australian Capital Territory pallcareact.org.au

• Northern Territory nt.gov.au

Or call the National Palliative Care Information Line on 1800 660 055 for information about services in your state or territory.

Rural and regional palliative care services

CareSearch (caresearch.com.au) is Australia’s palliative care knowledge network, where you can find links to helpful resources and services for patients and families in rural areas.

HOPE IS IMPORTANT

Hope is what gets you through each day, and there is always the possibility of finding a glimmer of hope on the darkest days.

Hope means different things to different people, and what you hope for may change over time.

Make plans to do the things that are important to you and keep setting goals – large and small, short term and long term. You may hope to go to a grandchild’s concert, to pick your first summer tomatoes, to be free of pain, or to simply share more experiences that bring you joy with the people you love.

Sharing your hopes, goals and dreams with your healthcare team will enable them to provide you with care centred on your needs.

Finding out your cancer can no longer be cured is likely to bring up many confronting emotions for you and those close to you. Confusion, sadness and intense grief are common feelings. Depending on your age and situation, you may be grieving the loss of what you expected and wanted life to be, or simply grieving about leaving loved ones behind; not wanting them to feel sad or suffer because you are gone.

Maybe you are feeling ‘it is time’ and although it is sad to be leaving your loved ones and life behind, you may no longer have the energy or desire to talk much any more. You have been through enough and want to be able to say your goodbyes. But you might be worried about expressing that to those you care about.

You and those close to you may have many questions at this time about:

• palliative care services and how to access them

• which health professionals are involved in palliative care

• symptoms, treatment during palliative care and end-of-life care

• medications to help with pain and other symptoms

• getting your affairs in order

• lifestyle and quality of life when cancer can’t be cured

• and much more.

END-OF-LIFE CARE

Although we have touched on end-of-life care in the previous pages, we have not covered this in detail in this kit. We understand it is a difficult topic for many people to face, even if it is not relevant for you at this time. Many people with ovarian cancer will live for years after their diagnosis, but for others this may not be the case. If you or someone you know is dying and would like information and support, please contact Ovarian Cancer Australia on 1300 660 334.

• Cancer Australia’s booklet ‘Finding the words: Starting a conversation when your cancer has progressed’ is designed to help you start conversations about your needs and care with the people who can provide support. You can find it online or order a print copy at canceraustralia.gov.au

• You may also find the Cancer Council booklet ‘Facing end of life’ helpful, 13 11 20, cancer.org.au

• For information regarding Wills, getting insurance when you have cancer and advance care plans, see ‘Practical matters’ in Chapter 3: Staying well.

GLOSSARY

After a diagnosis of ovarian cancer, it may feel like you have a whole new language to learn.

Medical professionals often use terms you may not be familiar with and can be confusing. Don’t be afraid to ask health professionals to explain any words or phrases you do not understand. It is important you feel sure about everything to do with your treatment and care.

The pages that follow include definitions of some of the most common terms you may hear and read.

HELPFUL TERMS

ABDOMEN

The area between the ribs and hips containing the stomach, intestines, liver, gall bladder, bladder, kidneys and spleen. In women, the abdomen also includes the uterus, fallopian tubes and ovaries. The abdominal cavity is lined with the peritoneum.

ADVANCED CANCER

Cancer is called ‘advanced’ when it has spread from its original site to another area or organs. In ovarian cancer, advanced cancer is stages 3 and 4.

ANAEMIA

A deficiency of red cells or of haemoglobin in the blood, which can result in weakness and tiredness.

ANALGESIA

Medications that help to control and relieve pain.

ANTI-EMETICS

Medicine prescribed to help stop you feeling sick (nausea) and being sick (vomiting).

ASCITES

A build-up of fluid in the abdomen that causes bloating, swelling and discomfort. The fluid can be drained to relieve the discomfort.

BENIGN TUMOUR

A growth that is not cancer (non-malignant) and cannot spread to other parts of the body.

BILATERAL SALPINGO-OOPHORECTOMY

Surgical removal of both fallopian tubes and both ovaries.

BIOLOGICAL THERAPY

Treatments that help to slow down or stop the growth of cancer cells. They work by boosting the immune system to kill the cancer cells, changing how cancer cells signal to each other to grow, or stopping the growth of the cancer’s blood supply. Examples include immunotherapy, vaccines, monoclonal antibodies and gene therapy.

BIOPSY

Removing a sample of tissue so it can be examined under a microscope to help diagnose cancer or another disease.

BORDERLINE TUMOURS

Tumours closely associated with ovarian cancer, although they are not strictly classified as ovarian cancer. Commonly referred to as ‘low malignant potential’ tumours, they are not considered to be malignant and have a very good prognosis.

BOWEL OBSTRUCTION

A blockage in the bowel that may be caused by a tumour or as a result of surgery.

BRCA1 AND BRCA2

A gene change (mutation) that may be inherited from your mother or father. These mutations are associated with a higher risk of breast, ovarian and other cancers.

CA125

A protein in the blood that can be raised due to a number of factors including cancer. For this reason, the CA125 protein can be referred to as a ‘tumour marker’.

CANCER

A disease where cells in the body behave and grow abnormally and form a malignant growth called a tumour. Malignant tumours can spread into other parts (tissues) of the body.

CHEMOTHERAPY

Medicines to slow the growth of or destroy cancer cells.

CT (COMPUTED TOMOGRAPHY) SCAN

A series of x-rays that are computerised to provide a cross- section picture of internal parts of the body. May be used to diagnose ovarian cancer, plan treatment and for follow-up.

CYST

A fluid-filled sac. When it develops in an ovary, it is called an ‘ovarian cyst’. Most ovarian cysts are harmless and will go away by themselves. Cysts are monitored very closely because some can grow very large and cause uncomfortable symptoms and some can become malignant.

CYTOREDUCTIVE SURGERY

This surgery for ovarian cancer typically includes the surgical removal of the uterus, both fallopian tubes, both ovaries and omentum, and resection of metastatic lesions from the peritoneal surfaces or from the bowel. This is also known as ‘primary cytoreductive surgery’ or ‘debulking’.

DEBULKING

See ‘Cytoreductive surgery’.

EPITHELIUM

The cells that line internal and external surfaces of the body, including the skin and the outer surface of the ovaries.

EPITHELIAL OVARIAN CANCER

This is the most common type of ovarian cancer, accounting for 9 out of 10 cases.

FAMILY OR FAMILIAL CANCER CENTRE/SERVICE

A centre where genetic counsellors can talk to you about genetic testing if you have a family history of cancer and wish to consider testing for yourself, children or other family members.

GENES

Small pieces of DNA: the material that acts as a ‘master blueprint’ for all the cells in your body. Your genes determine such things as what colour hair and eyes you have and how tall you are. If you inherit specific faulty genes, it may mean you have an increased risk of certain types of cancer.

GENETIC

Relating to genes. A genetic condition is one caused by a fault in one or more genes and may have been inherited.

GERM CELL OVARIAN CANCER

Ovarian cancer that begins in the immature cells in the ovary that eventually develop into ova. Only 4% of ovarian cancers are germ cell and they mainly occur in younger women.

GRADE

A number that describes how similar cancer cells are to normal cells. Grade 1 is the lowest grade, where there is the highest chance of successful treatment. Grade 3 is the highest grade. Also see ‘stage’, which is a measure of how far cancer has spread.

GYNAECOLOGICAL ONCOLOGIST

A gynaecologist who has done a further 3 years of specialist training in treating women with cancer of the reproductive organs, including ovarian cancer.

GYNAECOLOGICAL ONCOLOGY NURSE

A nurse who specialises in cancer care and may administer chemotherapy, assist with radiotherapy, and provide care, counselling, information and support.

HRT (HORMONE REPLACEMENT THERAPY) OR HT (HORMONE THERAPY)

Prescription medicines that supply the body with hormones that are no longer produced in the body after menopause. Used to help relieve menopausal symptoms.

HYSTERECTOMY

Surgical removal of the uterus (womb).

INTRAPERITONEAL

The lining of the abdominal space is called the ‘peritoneum’. Intraperitoneal means within the peritoneum. Intraperitoneal chemotherapy is when chemo is delivered directly into this space. Any fluid that accumulates in this space is called ‘ascites’.

IMMUNOTHERAPY

Treatment that stimulates the body’s immune system to fight cancer.

LAPAROSCOPY

A minor operation using a small telescope (laparoscope) to look into the abdomen.

LAPAROTOMY

An operation to open the abdomen and examine the internal organs.

LYMPH NODES

Small bean-shaped structures in the neck, armpit, groin and abdomen that filter lymph fluid to prevent harmful agents from entering the bloodstream. Ovarian cancer may spread to the lymph nodes.

LYMPHOEDEMA

A build-up of fluid that causes swelling. After lymph nodes have been removed, lymph fluid sometimes stops flowing freely through the lymphatic system, causing it to build up in one area of the body.

LYMPHADENECTOMY

Surgical removal of one or more lymph nodes.

MRI (MAGNETIC RESONANCE IMAGING)

A computer scan using magnetic fields and radio waves to build up a detailed picture inside the body. May be used to help diagnose ovarian cancer.

MALIGNANT TUMOUR

Tumours can be benign (not cancerous) or malignant (cancerous). Malignant tumours can spread to other tissues or parts of the body.

MASS

A tumour that may or may not be malignant.

MEDICAL ONCOLOGIST

A doctor who specialises in medicines used to manage and treat cancer, including chemotherapy and pain medicine.

METASTASIS

A cancer that has spread from another part of the body – also known as a ‘secondary cancer’. For example, a cancer that originates in the ovaries but has spread to the lungs is not called ‘lung cancer’ but instead is called ‘metastasised ovarian cancer’.

OMENTECTOMY

Surgical removal of the omentum, which is necessary if ovarian cancer has spread to this tissue.

OMENTUM

A layer of protective fatty tissue covering the abdominal organs.

ONCOLOGIST

A doctor who specialises in the study and treatment of cancer.

OOPHORECTOMY

Surgical removal of one or both ovaries.

OVA

The ‘eggs’ that form from immature cells (germ cells) in the ovary. In a menstruating woman, one ova is released each month by an ovary – this is called ‘ovulation’.

PALLIATIVE CARE OR TREATMENT

Care or treatment aimed at relieving symptoms and improving quality of life when an illness is no longer curable. Palliative care can be used alongside active treatment to manage symptoms.

PCA (PATIENT-CONTROLLED ANALGESIA)

A device that allows the patient to control their own pain-relief medicine.

PERIPHERAL NEUROPATHY

Numbness or tingling in your hands and feet caused by some chemotherapy drugs.

PERITONEUM

A membrane covering organs in the abdomen.

PET (POSITRON EMISSION TOMOGRAPHY)

An imaging test that can help reveal the metabolic or biochemical function of your tissues and organs.

PLEURAL EFFUSION

A build-up of fluid around the lungs.

PROGNOSIS

An assessment of the possible future course and outcome of a person’s illness.

RAD51C AND RAD51D

Inheriting faulty RAD51C or RAD51D genes has been found to increase the risk of developing ovarian cancer. These mutations are very rare, and together may contribute to less than 2% of ovarian cancers diagnosed.

RADICAL HYSTERECTOMY

An operation to remove the uterus and all the tissues holding the uterus in place (including the ovaries and fallopian tubes), and the lymph nodes around the uterus.

RADIOTHERAPY

Treatment using high energy waves similar to x-rays to destroy cancer cells.

RECURRENT OVARIAN CANCER

Cancer that reappears after it was removed or had gone into remission.

REMISSION

When cancer is not detectable or progressing after treatment. Complete remission means there is no evidence of active disease after treatment and the cancer may not come back for some time or at all. Partial remission means that there

is cancer remaining after treatment, but it is less active than before. This cancer will grow again at some time in the future.

RESIDUAL DISEASE

Cancer that remains after surgery. Surgery aims to remove all visible cancer, but this is often not possible in advanced ovarian cancer. Residual disease is usually treated with chemotherapy.

SECONDARY CANCER

A metastasis – a tumour that has spread from its original site to another part of the body.

SEX-CORD STROMAL TUMOURS

Ovarian cancer that begins in the ovary cells that release female hormones. These tumours are very rare, accounting for about 5% of ovarian cancers.

STABLE DISEASE

Cancer that is neither growing nor shrinking.

STAGE

The stage of your cancer describes how advanced it is and how far it has spread (discussed in Chapter 1: Finding out).

STAGING

The process of working out the stage of a cancer. This is done during the initial surgery for ovarian cancer.

TRANSVAGINAL ULTRASOUND

An ultrasound examination where a small instrument is inserted into the vagina to give a clear picture of the inside of the uterus and the ovaries.

TUMOUR

See ‘Benign tumour’ and ‘Malignant tumour’.

TUMOUR MARKER

A chemical given off by cancer cells which circulates in the blood of the person with cancer.

CA125

Ovarian Cancer Australia – fact sheet on CA125, ovariancancer.net.au

CARERS

Carer Advisory and Counselling Service, 1800 242 636 Commonwealth Carer Respite Centres, 1800 052 222 Healthshare, healthshare.com.au
My Aged Care, myagedcare.gov.au

CHEMOTHERAPY

Cancer Council – free booklets and fact sheets about chemotherapy, 13 11 20, cancer.org.au

Look Good ... Feel Better 1800 650 960, lgfb.org.au CHILDREN – TALKING TO KIDS ABOUT CANCER

Australian Child & Adolescent Trauma, Loss & Grief Network, earlytraumagrief.anu.edu.au

Cancer Council – ‘Talking to kids about cancer’ (booklet), 13 11 20, cancer.org.au

CanTeen, 1800 835 932, email support@canteen.org.au, canteen.org.au

Kids Helpline, 1800 55 1800, kidshelp.com.au Reach Out, reachout.com

CLINICAL TRIALS

Australian New Zealand Clinical Trials Registry, anzctr.org.au

Australia New Zealand Gynaecological Oncology Group, anzgog.org.au

Cancer Australia, australiancancertrials.gov.au

Cancer Council Victoria – ‘Clinical trials for cancer’ (booklet), 13 11 20, cancervic.org.au

COMPLEMENTARY AND ALTERNATIVE THERAPIES

Cancer Council – ‘Massage and cancer: an introduction to the benefits of touch’ (booklet), 13 11 20, cancer.org.au

Cancer Council – ‘Understanding complementary therapies’ (booklet), 13 11 20, cancer.org.au

Cancer Council NSW – ‘Finding calm during cancer’ (podcast), cancercouncil.com.au

Complementary and Alternative Medicine for Cancer, cam-cancer.org

Memorial Sloane Kettering Cancer Center, mskcc.org

Oncology Massage Training, oncologymassagetraining.com.au

Quackwatch, quackwatch.com

CONTINENCE

Continence Foundation 1800 33 00 66, continence.org.au

National Continence Helpline, 1800 33 00 66

FAMILY AND FRIENDS

Ovarian Cancer Australia – Family and friends booklet, 1300 660 334, ovariancancer.net.au

FATIGUE

Australian Cancer Survivorship Centre – ‘Coping with cancer- related fatigue’ (fact sheet), petermac.org

FERTILITY

Access Australia, 1800 888 896, access.org.au
Cancer Council – ‘Fertility and cancer: A guide for people with cancer’ (booklet), 13 11 20, cancer.org.au

FINANCES

Cancer Council – ‘Cancer and your finances’ (booklet), cancercouncil.com.au

Legal, Financial Planning, Small Business and Workplace Referral Services, 13 11 20

Superannuation and cancer booklet, cancer.org.au

GENETICS

Ovarian Cancer Australia – ‘Genetic testing and hereditary ovarian cancer: A guide for people with ovarian cancer’ (booklet), ovariancancer.net.au

Ovarian Cancer Australia – webinar on family history and genetic testing, ovariancancer.net.au/webinars

Cancer Australia – information about family history, genetic testing for breast and ovarian cancer and family cancer clinics, canceraustralia.gov.au

Cancer Council Australia, search for family cancers, cancer.org.au

EviQ – information on cancer genetics and treatment, eviq.org.au

Human Genetics Society of Australasia, hgsa.org.au

Life insurance products and genetic testing in Australia, genetics. edu.au

NSW Health Centre for Genetic Education, genetics.edu.au

HELPFUL FORMS AND CHECKLISTS

North-eastern Melbourne Integrated Cancer Service – My Cancer Care Record, vics.org.au

International Centre for Allied Health Evidence, University of South Australia – search for ‘discharge planning checklist’, or unisa.edu.au

HELPLINES

Ovarian Cancer Australia – Ovarian Cancer Support Nurses and Support and Information Helpline, 1300 660 334, ovariancancer.net.au

Cancer Council Helpline, 13 11 20
Kids Helpline, kidshelp.com.au or 1800 55 1800

LIFE AFTER TREATMENT

Ovarian Cancer Australia: ‘Life following ovarian cancer treatment. A booklet for people who have been treated for ovarian cancer, and their families, partners and friends’, ovariancancer.net.au

Cancer Council – free programs that focus on wellness after cancer, 13 11 20

LYMPHOEDEMA

Cancer Australia – Lymphoedema booklet available in several community languages, canceraustralia.gov.au

MENOPAUSE

Ovarian Cancer Australia – fact sheet on early menopause from cancer, ovariancancer.net.au

Australasian Menopause Society – for information on menopause, HRT and doctors who specialise in menopause, menopause.org.au

Jean Hailes Foundation, jeanhailes.org.au

MENTAL HEALTH AND RELAXATION

Better Health Channel – Stigma, discrimination and mental illness, betterhealth.vic.gov.au

Better Health information on cognitive behavioural therapy, betterhealth.vic.gov.au

Beyond Blue – Reducing stigma and discrimination, beyondblue.org.au

Cancer Research UK – Meditation, cancerresearchuk.org Healthtalk.org – Depression: stigma and mental health, healthtalk.org

Memorial Sloan-Kettering Cancer Center – Mindfulness and stress reduction resources for people with cancer, mskcc.org

NURSES

Ovarian Cancer Australia – Teal Support Program, ovariancancer.net.au/teal-support-program

NUTRITION AND EXERCISE

Ovarian Cancer Australia – for information on the benefits of support from an exercise physiologist and dietitian, 1300 660 334

Australian Cancer Survivorship Centre – fact sheets about life after treatment, via petermac.org

Cancer Council – ‘Nutrition and cancer’ and ‘Living well after cancer’ (booklets), 13 11 20, cancer.org.au

Dietitians Australia – lists accredited practising dietitians around Australia 1800 812 942, dietitiansaustralia.org.au

Exercise and Sport Science Australia – lists accredited exercise physiologists, essa.org.au

National Cancer Institute (United States) – lists healthy eating tips, cancer.gov

OPTIMAL CARE

‘Optimal care pathway for women with ovarian cancer’ and ‘Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer’ canceraustralia.gov.au/optimal-cancer-care-pathways

PAIN

Cancer Council – ‘Overcoming cancer pain’ (booklet), 13 11 20, cancer.org.au

PALLIATIVE CARE

Australian Capital Territory pallcareact.org.au
Cancer Council – ‘Understanding palliative care’, and ‘Living with advanced cancer’ (booklets), 13 11 20, cancer.org.au

CareSearch, caresearch.com.au
National Palliative Care Information Line, 1800 660 055

New South Wales palliativecarensw.org.au

Northern Territory nt.gov.au

Palliative Care Australia, palliativecare.org.au

Queensland palliativecareqld.org.au
South Australia pallcare.asn.au
Tasmania pallcaretas.org.au

Victoria pallcarevic.asn.au
Western Australia palliativecarewa.asn.au

PERSONALISED MEDICINE

Ovarian Cancer Australia – information about personalised medicine programs, ovariancancer.net.au

RADIOTHERAPY

Cancer Council – ‘Radiotherapy’ (booklet), 13 11 20, cancer.org.au

RECURRENT CANCER

Ovarian Cancer Australia, 1300 660 334
Ovarian Cancer Australia – Fear of recurrence booklet,1300 660 334, ovariancancer.net.au

Cancer Council 13 11 20

US National Ovarian Cancer Coalition – comprehensive booklet on recurrent ovarian cancer, ovarian.org

REFERRAL

Canrefer – for names of individual gynaecological oncologists, canrefer.org.au/gynaecological-oncologists

RESEARCH

Ovarian Cancer Australia – ‘Research into ovarian cancer’ (fact sheet), ovariancancer.net.au

Ovarian Cancer Australia – ‘Latest developments into ovarian cancer’ (webinar), ovariancancer.net.au/webinars

SEXUALITY

Ovarian Cancer Australia – ‘Sexuality, body image and relationships after ovarian cancer’ (booklet), ovariancancer.net.au

ASSERT NSW – for details of sex therapists in all states, assertnsw.org.au

Australian Psychological Society 1800 333 497, psychology.org.au

Relationships Australia, relationships.org.au
Society of Australian Sexologists, societyaustraliansexologists.org.au

STOMA

Australian Council of Stoma Associations, australianstoma.com.au

SUPPORT GROUPS

Ovarian Cancer Australia – information about support groups in your area, 1300 660 334, ovariancancer.net.au

Ovarian Cancer Australia monthly online support group for younger women (under 50), ovariancancer.net.au/younger-women

Ovarian Cancer Australia Facebook Support Group for people diagnosed with ovarian cancer facebook.com/groups/359547902456355

Ovarian Cancer Australia Facebook Support Group for Carers, Family and Friends facebook.com/groups/739541970853000

Cancer Council forums, Cancer Connect and Cancer Council support groups, 13 11 20, cancer.org.au

Cancer Council NSW Advanced Cancer Patients Telephone Support Group, 13 11 20

CanTeen 1800 835 932, canteen.org.au

Healthshare, healthshare.com.au

QLife, 1800 184 527, qlife.org.au

TELEHEALTH

Department of Health, search for telehealth, health.gov.au

The Resilience Kit is a collaborative project involving the time, skills, generosity and compassion of many individuals and organisations.

Our heartfelt thanks to the women with ovarian cancer and their families for showing us the true meaning of resilience through their stories, quotes and their enthusiastic involvement in the photography and review of this resource:

• Nadia Addabbo

• Jan Antony

• Hannah Catton

• Andrea Dillon

• Diane Gardiner AM

• Tricia Goodrich

• Aaliyan Hashmi

• Adeena Hashmi

• Imran Hashmi

• Sufyan Hashmi

• Sabrina Imran

• Laura Langdon

• Robyn Leslie

• Francine Marques

• Beatrice Matthews

• Julie McIntyre

• Michelle Olson

• Jane Power

• Kasie Ryan

• Sadra Saeed

• Rana Saeed Ahmed

• Madeleine Selian

• Victoria Sidoti

• Sarah Tidey

• Paul Towers

• Kristin Young

Thank you to the many women and their families who contributed to our previous editions, and to the author of the first and second editions, Andrea Ball.

This Resilience Kit Review is supported by funding from the Australian Government as part of the Teal Support Program.

We thank the following reviewers:

• Jaclyn Bongiovanni (Palliative Care Nurse Specialist)

• Dani Bullen (Clinical Psychologist)

• Ingrid Currington (Dietitian)

• Wendy Dawson (Gynaecological Clinical Nurse Consultant)

• Kim Hobbs (Social Worker)

• Dale Ischia (Exercise Physiologist)

• Di Kenneally (Ovarian Cancer Nurse Consultant, Ovarian Cancer Australia)

• Carrie Lethborg (Social Worker)

• Liz Lobb (Professor of Palliative Care)

• Janine Lombard (Medical Oncologist)

• Hiren Mandaliya (Medical Oncologist)

• Anne Mellon (Gynaecological Clinical Nurse Consultant)

• Deborah Neesham (Gynaecological Oncologist)

• Rachel O’Sullivan (Gynaecological Oncologist)

• Amy Pearn (Genetic Counsellor)

• Michelle Peate (Behavioural Scientist/Researcher)

• Veronica Perera (Communications Specialist, Ovarian Cancer Australia)

• Hayley Russell (Senior Research Manager, Ovarian Cancer Australia)

• Louise Sharpe (Clinical Psychologist)

• Alison Trainer (Geneticist)