Life following Ovarian Cancer Treatment

This booklet is for people who have had treatment following a diagnosis of ovarian cancer.

You may already have had weeks or months of uncertainty and anxiety about the diagnosis and treatment. You may have found the treatment confronting or difficult. It may feel as though your life has turned upside down. And now, after treatment, what will life be like?

This resource explores questions you may have about how your life will be different after treatment. We discuss common feelings and symptoms post-treatment. We include tips that may help you to adapt to changes to life now and in the future.

Having ovarian cancer and treatment is not the same for everyone. A person who lives in a remote part of Australia will have a different experience from someone in a metropolitan area. For someone in a remote region, there may be complex travel issues as well as concern about spending time away from home, country and family.

Ovarian Cancer Australia is committed to understanding the experiences of all people who face ovarian cancer and its treatment, throughout Australia, and to providing information and support wherever possible.

Survivorship’ is a name for the time from cancer diagnosis through the rest of your life. It can apply to any person who has been diagnosed with any kind of cancer. It especially describes the period after treatment when you and your healthcare team focus on:

• Managing the effects of cancer and its treatment, both immediate and longer term: focusing on recovery from your treatment, including both practical and emotional impacts and other needs you may have (e.g. returning to work or study).

• Monitoring for changes in your health and knowing what to do about them

• Coordination between members of your team including hospital and local GP.

Some people who have completed treatment for ovarian cancer like the term ‘survivor’ and some do not. Often, diagnosis does not occur before the cancer has spread into other parts of the body. Many women with ovarian cancer experience recurrence and then further treatment; this cycle may occur several times. It might not feel like ‘survival’ if the prospect of recurrence, further treatment and even end-of-life care seem near at hand.

You do not have to think of yourself as a ‘survivor’. But it is a term that we use in this booklet and that you will see used by other services. And the information within this booklet is likely to be helpful to many people who have finished their cancer treatment.

The diagnosis of ovarian cancer is generally quickly followed by some weeks of rapid decision-making, medical appointments, treatment and recovery.

Emotional effects

You may have had or still have overwhelming emotions. Perhaps you felt rushed into treatment and didn’t have a chance to think properly about your treatment options. This may be particularly true if you are young and felt you were not able to explore your fertility options.

You may feel great sadness about the sudden and dramatic impact cancer is having on your life. You may feel angry or cheated that your cancer was not diagnosed sooner and was not found until the cancer was advanced. You may be worried about the effect of cancer and treatment on your children, partner and parents.

When I was first diagnosed, my emotions were all over place: from tears, ‘why me’, to ‘I can conquer this’. As time has gone by, I have realised that I can only do what I can do, it’s my body that is diseased, I am not sick and I try to live life the way I did pre cancer. I still have my tears but they are not as regular as they once were.

A cancer diagnosis can be very traumatic. The shock of learning that you have cancer is immense, particularly if it comes ‘out of the blue’ as it does for many women diagnosed with ovarian cancer. For some people it may trigger strong feelings of fear, shame and avoidance. If you have trauma in your past, a cancer diagnosis may trigger post-traumatic stress. Your culture and family may influence how you take on board the diagnosis and how you ‘cope’ with treatment and the aftermath of treatment.

The Ovarian Cancer Optimal Cancer Care Pathway (see Resources), developed by cancer specialists and consumers, is an excellent guide that details the steps from early symptoms through to post-treatment.

Life is forever changed by cancer. Cancer can impact every aspect of your life – your health and wellbeing, your sense of security about the future, your finances and your relationships. It may have overturned your vision about how your life would unfold. It may bring immediate and unfamiliar challenges.

These challenges of cancer can affect your outlook on life.

In some ways, I feel that it is harder for the ones around me to understand or comprehend what is happening by just looking at me. From my appearance, there seems to be nothing wrong, I still look the same, and talk the same.

You may be someone who has always risen to new challenges but find yourself deflated by the challenges of cancer. Your reactions may cause you to question who you are.

Among women with a religious or spiritual faith, cancer might bring a renewed sense of belief. Other women may lose their faith.

Ovarian cancer mainly affects women over the age of 50 but it also occurs in younger women. Younger women may feel especially impacted, because of their aspirations and alterations to plans for how their life would have been and because of the possible effects on their fertility. Younger women diagnosed with ovarian cancer may experience poorer quality of life than older women.

We do not discount the great difficulties posed by cancer and its treatment. However, people who have undergone cancer and treatment also sometimes report positive changes in their lives. These can include greater empathy, a better approach to health and lifestyle, a shift in priorities towards relationships and ‘things that really matter’, and a heightened appreciation of life.

I feel at times that the opinion of others is, ‘Well, you are done now, you are all good’, when in reality this is far from the way you are feeling. My life has changed forever, I am still me, but I’m different.

Cancer may have affected your work or study, your financial position and your intimate relationships.

WORK AND STUDY

You will need to have some time away from work for treatment and to recover. Being able to take time away from work but knowing you will be able to return to work after treatment can be a link to feeling ‘normal’ for many women. It can contribute to a higher quality of life.

Talk with your doctor about returning to work. They may have some insights into when the best time might be.

You may need to plan the return to work with your employer. You may have set some planning in place before you left work, or you may need to start a discussion with your employer about return to work planning.

Your employer should have a return to work policy or process. You might first discuss it with your manager (if you are on good terms with them and they are proactive and helpful) or with the Human Resources department.

Depending on the type of work you do, it may be relatively easy to return to work when you feel well enough. You may be able to work from home, with assistance from your employer in setting up a home-based workplace. If your work was labour-intensive and physically demanding, it may be less easy to return to the exact work you were doing before treatment. In this case you will need to plan your return to work with your employer.

Workplaces are required to enable you to return to work except in certain circumstances. You should be able to negotiate a plan with your employer that allows for the fact that you have received cancer treatment and may not yet be as fit or resilient as before. This may mean, for example, returning on reduced or more flexible hours, with less-extended periods of sitting, or with some training provided.

If you were not in paid work at the time of treatment but were looking for work, you may feel that there are more obstacles in your path now. Remember that you do not have to tell a prospective employer that you had cancer unless you want to.

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.

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 medial issues I’m facing.

There are some avenues of support available.

• 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 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.

SEXUALITY AND INTIMACY

Treatment for ovarian cancer will often result in sudden menopause for women who haven’t yet been through menopause. This can then lead to intimacy issues including discomfort during sex and a lower sex drive.

Women sometimes experience a poorer body image as a result of ovarian cancer treatment. Treatment causes scarring, which may affect how you feel about yourself as a sexual person. These effects can be particularly problematic for younger women. We discuss fertility and menopause later in this booklet.

Ovarian Cancer Australia’s guide to sexuality after ovarian cancer (see Resources) is a comprehensive overview of many aspects of sexuality and intimacy; it was developed by cancer experts with insights from women who have had ovarian cancer.

INFORMATION FOR CARERS

Being a carer can be a very positive and fulfilling experience – as well as frustrating, tiring and sometimes financially costly.

Some families manage caring for a family member very well. There may be lots of family members able to help and share the responsibility, and there may be a strong commitment to family. Yet there may still be difficulties. If you live in a remote area, getting health services and other services can be difficult.

Not all families are large. Yours may be a small family with very few people available to help. The responsibility may fall onto one person. That person will mostly welcome the chance to provide care, although they may sometimes find they would benefit from having a break from their caring role so it does not become burdensome.

If you are the main carer, it is most important that you take care of yourself. This may mean taking time away from caring, and sometimes calling in others to take over for you. You may need financial help if you are taking time away from work to care. You can find help via the resources listed.

Coping with fear of cancer coming back

Women with ovarian cancer report intense feelings related to fear of their cancer returning. They may have extreme anxiety in the days before their follow-up appointment and scan. It is normal to feel this way.

You may have found ways to manage anxiety in your life before cancer. You could try seeing if they help.

If anxiety is a new feeling for you, we list below a few things you can try to reduce your anxiety. In the days before follow-up, you may want to do some or all of these things.

You can choose between doing things that take your mind off the anxiety or observing your anxiety without engaging too emotionally with it.

Comfort can relieve isolation and comes in many different forms – some women may find comfort in having the listening ear of a relative or friend, someone who does not try to fix things but who can listen. Others may find comfort in sharing time with those close to them while not hearing many words when engaging in day-to-day activities or crafts, physical exercise or TV or whatever fits and during this time there may not be a lot of words because words are not always needed when sharing time together.

It may not be possible to calm your anxiety. But you may find it reassuring to keep in mind that anxiety is a normal and valid response to a threat.

BEING ABSORBED IN SOMETHING ELSE

Being absorbed in something other than your health will help. If you have paid work, this is a good way to distract yourself. If you have a lot of family, being involved with their lives and concerns might distract you from yours. Perhaps you have been a writer or done crafts before and want to resume. Or you might want to start watching a new TV series or rewatch a favourite series.

TALKING WITH FRIENDS

Friends are a great distraction. You could talk with them about your fears – or not talk at all about it. Going for a long walk with a friend in the bush or parks near you is a pleasant way to spend some time together.

Online friends are also important. You might get involved with a discussion about nothing much online. Or you may find yourself supporting others who are going through difficult times themselves.

‘SITTING’ WITH IT

Rather than distracting yourself, you may want to just ‘sit with’ the anxiety. Feelings generally reshape over time. If you can experience the anxiety growing, then reducing, then perhaps growing again, it can make anxiety feel a bit less confronting. Like all emotions, anxiety ebbs and flows. Rather than avoiding it or engaging with it, it is possible to simply be aware of it.

I really don’t know how you could change the stress and anxiety between when we see the oncologist and the appointment for a scan to be done and then when we get to see our oncologist again. Where I live, it [can] be a couple of weeks just to get the appointment. I try to keep myself busy so that my mind does not wander back to the what if’s. It’s hard.

BREATHING EXERCISES

Breathing exercises are an extension of ‘just sitting’. The MSKCC resource gives examples if you would like to give them a try.

If your anxiety becomes so severe that it is preventing you from doing your usual daily activities, or you are unable to control it by using the techniques we have suggested above, we strongly recommend seeing your GP for further support.

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’.

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.

What is included in your treatment plan / survivorship cancer 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 to include wellbeing and rehabilitation recommendations (e.g. 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 (e.g. recurrence)

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

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.

Some women will have most reviews with their GP. For other women, 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 your GP, surgeon, medical oncologist and specialist nurses to plan. But the treatment plan will initially be agreed upon by you, your GP and specialist.

Women who have been treated for ovarian cancer require certainty about who they should contact if they experience symptoms. Women 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.

You may be helped at this stage by reaching out to peer supports (see ‘Getting support’).

The interface between GPs and oncology teams needs further definition to reduce confusion about responsibilities and [ensure] medical issues don’t fall through the gaps, which is what happened to me. I think peer support during this time would have helped me a lot e.g. knowing I could link with someone who has ‘worn these shoes’.

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’.

To speak with an ovarian cancer nurse call 1300 660 334 or email support@ovariancancer.net.au

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 this.

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.

Needs assessment

You may also have a needs assessment around the time of treatment ending. It will be done by a member of your healthcare team. It will assess what support you already receive as well as any gaps in your needs for supportive care – things like physiotherapy, nutrition advice, psychological care, financial assistance and spiritual care. These types of assistance are provided by allied health professionals.

The needs assessment will result in referrals to these workers as required. If this does not happen for you, try to get an appointment with your specialist cancer nurse who can work on ensuring you get the ongoing supportive care you need.

It is very important that you discuss any concerning symptoms with your doctor. Sometimes women feel they don’t want to bother their doctor with what may be a minor symptom because it may distract from the main follow-up discussion.

Women may experience many symptoms after treatment, or only a few.

Signs of a recurrent cancer, progression, new cancer or metastases

If cancer recurs, symptoms may be vague. Sometimes there are no symptoms and recurrent ovarian cancer may be detected through a CA125 blood test.

Sometimes women notice changes that may suggest the cancer has recurred or spread.

The following list shows the symptoms that you should consider significant. While these symptoms may be due to causes other than ovarian cancer recurrence you should tell your GP, nurse or specialist. If you cannot get an appointment or if your symptoms are severe, go to an emergency department and take a copy of your treatment summary and follow-up plan / survivorship care plan. It is important to talk with your doctor soon after your treatment finishes and have an agreed plan of what to do if symptoms occur.

Don’t be afraid to tell your doctor you want something looked into. There are too many signs that can easily be diagnosed as something else. You know your body more than anyone.

The following symptoms should be checked by a healthcare professional as soon as possible:

• bleeding from your vagina or rectum

• bloating or abdominal swelling

• unexplained weight loss

• changed appetite

• changes in bowel habit (e.g. persistent diarrhoea, constipation) or urinary problems

• new and persistent

  • pain

  • fatigue

  • leg swelling

  • masses (e.g. lumps in your neck or groin)

  • cough or breathing problems

  • nausea and vomiting.

Short-term effects

Treatment will cause immediate or short-term effects. For example, while having chemotherapy, you are likely to:

• feel sick or nauseated

• have a sore mouth and possibly mouth ulcers and a dulled sense of taste

• be more likely to bruise and bleed

• lose your hair

• become anaemic and be tired or short of breath as a result have bowel symptoms like diarrhoea and/or constipation.

These short-term effects can mostly be treated with medications or adjustments to medications. Hair loss and anaemia are likely to recover after chemotherapy ends.

Treatments – and the cancer itself – can also cause longer term effects, sometimes called late effects. Late effects from cancer treatment are common for survivors.

Longer term / late effects include:

• scarring where the doctor made the incision

• change of sensation near the wound due to nerve damage caused by surgery

• early menopause and infertility

• fatigue

• ‘chemo brain’ / ‘brain fog’

• urinary problems

• changes to self-esteem / body image

• lymphoedema – swelling caused by a build-up of lymph fluid

• depression and anxiety

• sleep issues

• peripheral neuropathy (numbness or tingling in the hands and feet)

• bowel problems

• mobility issues

• osteoporosis (weakened/brittle bones that may lead to fractures)

• lung and heart problems

• developing another cancer

• cataracts

• thyroid issues.

FERTILITY AND MENOPAUSE

Menopause and its symptoms are likely after treatment. Menopause can occur suddenly.

The symptoms can be more intense than for women who have a natural menopause.

Symptoms of early-onset menopause include:

• loss of fertility

• flushing (also known as hot flushes or hot flashes)

• night sweats

• dry vagina

• reduced sex drive

• pain or other issues with sex.

Younger women may be very concerned about not being able to have children after treatment for ovarian cancer. Younger women may be able to talk to a reproductive biology team about their possible fertility options before or during treatment. Your doctor may be able to refer you to a fertility counsellor or sexuality counsellor to discuss these effects. For more detailed information and tips on how to manage menopause refer to the resource below.

I felt completely robbed when I was diagnosed. I never had children and having a hysterectomy was a difficult enough decision. To then be told that they found cancer in my fallopian tubes completely shocked me. Although my treatment is now complete, I still cry and that’s ok.

FATIGUE

Fatigue is a very common and concerning problem after cancer treatment. It can last for a long time after treatment has finished. Fatigue is different from normal tiredness – it is a feeling of exhaustion that is not relieved by sleep or rest.

Fatigue can occur as a side effect of chemotherapy and/or it can be caused by other side effects, like sleeplessness and depression.

Fatigue may be eased by:

• taking short naps or rests during the day – but not long naps, which will affect your night-time sleep

• ‘energy pacing’ – this is a fatigue-management technique used to help conserve energy and prevent overexertion (short times of physical activity followed by rest) – taking control to balance activity and rest will prevent a ‘crash’ after exertion

• walking regularly during the morning or afternoon – try not to exercise before going to bed

• accepting help with the things that you find too tiring to do

• avoiding caffeine and alcohol, which can affect your sleep

• speaking with a dietitian about your nutrition.

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 or if symptoms persist. You may also benefit from getting a referral to an exercise physiologist who can make an assessment and support you with an exercise program to increase your overall energy levels.

‘CHEMO BRAIN’ / ‘BRAIN FOG’

Cancer and its treatment can affect your memory and concentration. You may find you:

• lose your train of thought easily / forget specific words

• become forgetful or confused

• find it difficult to plan because you can’t ‘think straight’

• have other issues related to memory.

This side effect can be especially worrying if you are returning to work. Your workplace may be able to offer flexibility in your hours and tasks that help you to continue with work. You may also benefit from using lists and setting reminders in your phone to help you remember appointments, shopping and other important dates. Puzzles, word games and apps focusing on ‘brain training’ are also helpful tools tailored to improving memory, attention and flexibility of thinking.

If chemo brain is affecting your life, talk to your doctor. An occupational therapist or specialist psychologist may be able to help you with strategies that will allow you to cope.

URINARY PROBLEMS

You may have urinary symptoms after surgery or radiotherapy, or they may have already been present but now worsened by your treatment. Symptoms might include urinary leakage such as stress incontinence (peeing when you cough or sneeze).

Urinary problems can be a symptom of ovarian cancer, where the cancer puts pressure on the bladder, making you feel like you need to pass urine. It is important to have this symptom checked by a doctor to confirm that it is not a sign of the cancer recurring.

You may find that you can manage the problem by emptying your bladder frequently. For further help, talk to a continence specialist, or ask your GP for a referral to a women’s health physiotherapist (also known as ‘pelvic floor physios’) who are trained in caring for women with pelvic floor problems and dysfunction. They may suggest some pelvic floor exercises to help strengthen your muscles and control your bladder function.

SELF-ESTEEM / BODY IMAGE

Ovarian cancer and its treatment can change how your body looks. These changes can occur quite quickly – for example, scarring after surgery and hair loss from chemotherapy. It can be confronting to see your body change so quickly. It may cause you to feel unsure of yourself or feel less attractive.

You or your partner may worry about how your body changes but that doesn’t mean your partner will no longer find you attractive. They may be unsure of what the changes mean and may also be aware of upsetting you. This uncertainty could stop them being able to support you in the best way. Talk about any changed feelings you both have about your body. You may be able to provide the reassurance necessary to be able to support each other better. A counsellor may also be able to guide you.

I found being open with my partner helped me through the changes. I would and still tell him when things concern me so he understands why I may shy away or cover myself up in front of him.

For some, cancer treatment causes a whole new appreciation of their body. The body is not just about appearance. Some women, when they feel well enough, increase their exercise and may take up or resume weight-lifting, running, yoga, dance and other activities that help them appreciate and improve their body’s strength, speed and flexibility. These activities can help with other symptoms that can come along with ovarian cancer, like fatigue and sleep issues.

LYMPHOEDEMA

Lymphoedema is a common problem affecting women who have been treated for ovarian cancer. If you had lymph nodes removed in surgery, you are more at risk of getting lymphoedema. Removal of lymph nodes means that lymph fluid in that area cannot drain in the usual way, so you get swelling caused by the build-up of fluid.

The swelling may occur in your legs or pelvic area. It may affect your mobility.

Lymphoedema may not be cured but symptoms can be reduced. Your GP or cancer nurse can help with advice about gentle exercise, massage, compression stockings and good skin care.

DEPRESSION AND ANXIETY

It is normal to feel anxious and unhappy following a cancer diagnosis.

Depression and anxiety are more common among women with ovarian cancer than among women who don’t have ovarian cancer. Younger women with ovarian cancer are more likely than older women to have depression.

These feelings may continue for some time, and may be made worse during treatment.

Women with ovarian cancer can feel a loss of control in having cancer, and anxious about symptoms possibly meaning the cancer is returning.

If you have day after day where you do not want to get out of bed, you avoid seeing other people and become easily irritable, these can mean that you may have depression. If you feel that you may have depression, it is important to seek help from your doctor. Your doctor may recommend that you see a psychologist or psychiatrist who specialises in treating people with cancer. Your doctor may recommend anti-depressants.

SLEEP ISSUES

Sleep problems are a common effect
reported by women who have had ovarian cancer treatment. It can be a consequence of the cancer and treatment, and/or of menopause caused by treatment. Importantly, it can be caused by worry and the major life changes you are going through.

Sleep issues can happen for months after treatment ends. Poor sleep has a significant effect on quality of life, and can worsen or lead to depression. It needs to be treated if possible.

Talk to your doctor if you often have very poor sleep. Techniques such as cognitive behavioural therapy and mindfulness-based stress reduction
can be helpful with sleep disturbance.

OSTEOPOROSIS

Osteoporosis is a possible late effect from ovarian cancer treatment.

After your ovaries are removed, you will have menopause (if you haven’t already). One of the risks after menopause is osteoporosis. This is where bones become weak and brittle due to changes in hormone levels and loss of minerals in the bones, which can lead to fracture. Some chemotherapy can also increase the risk of osteoporosis.

Your doctor may suggest that you have bone densitometry tests (known as DEXA) to monitor for signs of osteoporosis.

If you are concerned about your risk of osteoporosis, you can increase calcium and vitamin D in your diet:

• eat calcium-rich or calcium-fortified foods, such as dairy, spinach, tofu and calcium-fortified plant-based milk

• take a daily vitamin D supplement (ask your GP to check your vitamin D levels regularly)

• do weight-bearing exercise that puts good pressure on your bones – walking, running, weight-lifting

• quit smoking and reduce your alcohol intake – both of these things can increase bone loss.

  Calcium supplements may be an option, but some research has linked them to heart disease and other problems. There is conflicting evidence for their benefits and risks. Please talk to your doctor before taking calcium supplements.

  If the tests of your bone density show that you have osteoporosis, your doctor may suggest taking medication to help slow the progression by building up bone health and density. Specific types of exercises can improve bone density. Ask your GP for a referral to a physiotherapist or exercise physiologist for further advice.

BOWEL PROBLEMS

Bowel and other abdominal problems after ovarian cancer treatment can include diarrhoea, constipation, stomach cramps and other symptoms. These problems can often be treated by changes to the foods you eat, and sometimes with medications.

Talk to your GP or dietitian about bowel problems.

Bowel problems are sometimes caused by an obstruction related to cancer
– including cancer that has advanced. You may have constipation, nausea, vomiting, pain and/or a distended stomach / bloating. You should see your doctor urgently if these symptoms occur.

PERIPHERAL NEUROPATHY

This is tingling, numbness or pain in your hands, feet, fingers and/or toes. It is
a side effect of chemotherapy. It affects a lot of women who have had ovarian cancer treatment. It can be very uncomfortable and may not lessen over time. The numbness can impact fine motor skills such as picking up small objects, doing up buttons and shoelaces. It can also reduce your balance, which can be a safety risk for some people. Your doctor may be able to adjust your medication to help delay or reduce this side effect or advise on creams or pain-relief that will help.

MOBILITY ISSUES

You may have reduced mobility or other functional issues after treatment.

Restoring your health and fitness levels through exercise and other support therapies after treatment (rehabilitation) can help with fatigue and cognitive problems as well as reduced physical mobility and endurance. Exercise is valuable in regaining strength and function, but it is important to discuss any changes in exercise routines with your specialist doctor. They may suggest a referral to a physiotherapist or exercise physiologist who can help
plan an exercise program specific to your rehabilitation needs.

This is not something that will improve overnight. Regaining the energy to exercise fully can take time. If you can only walk for five minutes, then do that to start with. Over time you become stronger, and everyone is different so it’s ok if you take three months to get to 20 minutes ... just don’t give up trying.

Many women with ovarian cancer move through cycles that involve receiving treatment then entering a follow-up phase. For some women, they may then learn of a recurrence of their ovarian cancer, which means they then receive further treatment. This cycle can occur repeatedly for some women.

Treatment for a recurrent cancer will depend on where the cancer is, how extensive it is, what treatment you had before, and what you want. Treatment options will depend on your individual situation but may include:

• chemotherapy

• surgery

• radiotherapy

• hormone therapy

• poly adenosine diphosphate-ribose polymerase (PARP) inhibitors

• symptom-based management or supportive care

• enrolment in a clinical trial.

I know I can handle it and work at the same time (at this stage anyway), I will get through it and I know that my medical future is likely to dictate what I can or cannot do, but what will be will be. I cannot change the fact that I now have recurrent cancer, but I can fight my way through, be strong for my family and friends and deal with it my way.

Being involved in decisions about further treatment is important. To enable you to make an informed decision, your doctor should discuss with you:

-the treatment that is being proposed

-its likely outcomes

-possible side effects.

If cancer is found, it may feel as though you are being rushed into more treatment. Where possible, ask for time to consider your options. Talk them over with your doctor. If your partner or a trusted friend can be with you during these appointments, it can help to have this second pair of ears.

You may want to discuss your decision further with your family and partner, or you may not want to. This is entirely up to you. Try not to feel pushed into choosing one alternative when you really would prefer another.

Your feelings about treatment may change over time. It is okay to decide not to have further treatment, even if it means you might have less time. Quality of life is also very important.

Palliative treatment

Palliative treatment is any treatment focusing on treating symptoms of the disease, rather than aiming to cure it. While palliative care is often involved near the end of a woman’s life, it is of benefit for many women prior to this and can be an important part of their treatment plan.

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.

Your doctor may suggest you take part in a clinical trial if there is a suitable one available. Or you can also ask your doctor about trials.

Clinical trials look at new treatments that have shown promise, or might improve side effects and provide new models of care. They can play a role throughout or after your treatment. They may offer new treatments, or they may be in areas such as allied health (e.g. exercise). Some women choose to take part in a clinical trial because they hope the new treatment will benefit them directly, and others also take part in trials to help guide future treatment for those with ovarian cancer.

‘Staying well’ can mean different things to different people. |It may be about recovering physical fitness after months of treatment. It may be about finding ways to manage feelings of depression or anxiety brought on by the rollercoaster of diagnosis and treatment. It may be about retaining a sense of steadiness or calm when the future is very uncertain. It may be about nurturing a sense of acceptance when your prognosis is poor.

Women who feel that they are able to control aspects of their lives, who feel motivated and persistent, may feel stronger and more purposeful as they negotiate their way through life after treatment. Having wellness goals is one way to feel more purposeful: for example, you may have goals in relation to getting back to doing the things you enjoy, being more active, having a nutritious diet or broadening your social network.

Rehabilitation

A needs assessment can help identify any gaps and the best supports available. The assessment can be completed before or during your treatment and if you feel this would be of benefit and have not received one, you can ask your treatment team. They may recommend that you have:

• exercise- or movement-based rehabilitation

• nutrition advice

• help coping with fatigue

• help with mental health issues

• help with practical or financial concerns.

Your rehabilitation program is based on your present needs but these can change.
Tell your medical team about any changes so they can adjust the program if needed.
Health professionals who may help with your rehabilitation after treatment include:

• occupational therapists

• dietitians

• social workers

• psychologists

• physiotherapists

• exercise physiologists

• rehabilitation specialists

• sex therapists, sexologists and pelvic floor health physiotherapists.

Exercise and nutrition

Exercise has many health benefits. It may help with depression, anxiety, pain, fatigue, physical functioning and overall quality of life. Poor nutrition, being over- or under-weight and lack of exercise are linked to poorer quality of life.

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. Over time, you may be able to improve your physical endurance. You may also want to look into yoga or pilates to help with improved movement but be careful as these forms of exercise often require you to lie on your stomach and this may not be appropriate post- surgery for ovarian cancer. It is recommended you see an exercise physiologist or physiotherapist before returning to general exercise to ensure the movements are safe for you.

You may also decide to see a dietitian, who can recommend the best foods for you to eat, to help with your sense of wellness and quality of life and to achieve a weight that is healthy for you.

Relaxation and mindfulness

Sleep is important for good health but can be disrupted by cancer treatment. If you are having trouble with sleep, tell your doctor, who may be able to advise of measures that can help.

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.

It was important to me to meet cancer with grace, intelligence and humour and I found mindfulness helpful during the transition, which is still going on might I say. This is a very personal journey that looks different for each individual.

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.

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.

Support is important for retaining a sense of purpose and wellbeing. Having a strong social network can help with depression, anxiety and your overall wellbeing. Some people may not feel that they do have a strong social network. It is important to know that support options are still available through support groups and peer support.

Family supports

For some women, close relationships become closer with a diagnosis of cancer. Our appreciation of our friends and partners can deepen immensely when we realise how devoted they are to our wellbeing. Despite this, there can still be a sense of isolation.

I am lucky to have a marvellous husband and a great group of friends who are willing to help me as much as possible and the longest time between my oncologist appointments has been 8 weeks. However, even saying that I can still feel fairly isolated at times as my future is still uncertain.

Not all women have close and strong attachments. Many factors can contribute to finding yourself alone or without close connection. It can make dealing with a cancer diagnosis, treatment and follow-up especially hard.

Receiving a cancer diagnosis can be a lonely experience even for someone who is surrounded by family and friends. Sometimes women feel they have to reassure people close to them.

No one in my family apart from a distant Aunt had been diagnosed with cancer and as such no one in my family knew much about cancer - me included. I found myself consoling my family and friends about my diagnosis. ... I had to put on a brave face and support the people around me as they came to terms with my health diagnosis when all I felt was that I was ready to fall in a heap and collapse.

If you have strong family connections, it can be very hard to be separated from them during treatment. Your family may live a long way away. Using social media can be a way of feeling connected.

Friends

Social interaction is important for overall wellbeing and may also have an impact on survival. Staying well and feeling well can be helped by being active and making time to be with friends and family.

If you feel well, you may wish to reach out to friends. You will have found that some of your friends become tremendously supportive from the moment of diagnosis, while others fade away. Truly supportive friends are among the best supports you will have.

Sometimes friends and friendships can disconnect following a cancer diagnosis. Some people simply don’t know what to say or do, and don’t want to be a bother, and so they may disconnect. This can be very hurtful.

One thing I discovered was that I formed bonds I never imagined and really saw people for who they truly are. I have reconnected with people and drifted apart from others.

Support through Ovarian Cancer Australia

Ovarian Cancer Australia provides a series of supports. You may wish to first connect by calling our Helpline, or please use the links provided.

Peer support and friendship are available from Ovarian Cancer Australia’s Facebook Support Group.

Helpline

1300 660 334

Support groups

Some run face to face and some are running online. www.ovariancancer.net.au/page/96/support-groups

Facebook support group

https://www.facebook.com/groups/359547902456355

Support from a cancer nurse through the Teal Support Program

www.ovariancancer.net.au/page/97/teal-support-program

Other support events that run throughout the year

www.ovariancancer.net.au/page/99/support-events

I am reading the Facebook support page and I find this really good and informative. Well done to whoever suggested this.

Your GP

Your GP is a great resource. They are often a link between you and your specialists. You may have a long-term relationship with your GP that means their reassurance and input are extremely important to you.

It is a great idea to check in regularly with your GP, who can help with many issues, including planning for managing any possible long-term or late effects from cancer and its treatment.

GPs can:

• link you to supportive care programs

• manage long-term side effects from cancer and treatment

• manage other health issues you are experiencing

• advise on wellbeing and how you can manage your own health

• advise on screening for health conditions, including cancer.

Your GP should have a copy of your follow-up plan / survivorship care plan. Your GP may be coordinating your follow-up, in consultation with your specialist.

If your GP does not have a follow-up plan / survivorship care plan, discuss with your specialist doctor or nurse about how you might have this plan made accessible to you and your GP.

Nurses and others in your healthcare team

Nurses can be a link between you and other members of your healthcare team. This applies to nurses who you meet in hospital as well as nurses who you link to once you are back home.

TEAL SUPPORT PROGRAM

Ovarian Cancer Australia is able to provide a cancer nurse for you if you wish. Speaking regularly with a nurse may help with things like uncertainty and distress.

The Teal Support Program is a free telehealth outreach program supporting women with ovarian cancer throughout their diagnosis, treatment and beyond. The program aims to provide continuity of care when you are not regularly seeing your treating team and focus on areas of care where there are unmet needs.

Your ovarian cancer nurse will work closely with your treating medical team. The ovarian cancer nurse can relay information to your medical team and gain guidance for you about the best way to support and treat you. The resource below will provide you with contact details for our Teal Support Nurses who will be able to support and guide you further.

ADVANCE CARE PLANNING

• Advance Care Planning Australia www.advancecareplanning.org.au

CARERS

• Cancer Council – Caring for someone with cancer, search at www.cancervic.org.au

• Carers Australia www.carersaustralia.com.au

• Peter Mac – Issues and concerns for carers, family and friends, search at www.petermac.org

CLINICAL TRIALS

• Australian Cancer Trials www.australiancancertrials.gov.au

CONTINENCE

• Continence Foundation of Australia www.continence.org.au

EARLY MENOPAUSE

• Ovarian Cancer Australia – Early menopause from ovarian cancer fact sheet www.ovariancancer.net.au/page/120/early-menopause

FEAR OF RECURRENCE

• Cancer Mind Care www.cancermindcare.org.au

• Gather my crew app www.gathermycrew.org.au

• Ovarian Cancer Australia – Fear of cancer recurrence www.ovariancancer.net.au/store/products/13/fear-of-recurrence-booklet

FINANCES AND LEGAL

• Cancer Council – Cancer and your finances, search at www.cancercouncil.com.au

• Cancer Council – Making a return to work plan, search at

  www.cancercouncil.com.au

• Legal, financial planning, small business and workplace referral services, call 13 11 20

• Superannuation and cancer www.cancer.org.au/assets/pdf/superannuation-and-cancer

LYMPHOEDEMA

• Australasian Lymphology Association www.lymphoedema.org.au

• Cancer Council Victoria – What is lymphoedema?, search at www.cancervic.org.au

MENTAL HEALTH

• Better Health – Cognitive behaviour therapy, search at www.betterhealth.vic.gov.au

• Beyond Blue www.beyondblue.org.au

• Cancer Mind Care www.cancermindcare.org.au

OPTIMAL CARE PATHWAYS

• Cancer Council − Optimal Cancer Care Pathway: Ovarian Cancer, search at www.cancer.org.au

• Cancer Council − Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer, search at www.canceraustralia.gov.au

OVARIAN CANCER AUSTRALIA

• To speak with an ovarian cancer nurse call 1300 660 334 or email support@ovariancancer.net.au

• Resilience Kit www.ovariancancer.net.au/page/93/resilience-kit

• Teal Support Program www.ovariancancer.net.au/page/97/teal-support-program

PERIPHERAL NEUROPATHY

• Cancer Council – Understanding peripheral neuropathy and cancer www.cancercouncil.com.au

RELAXATION AND SLEEP

• Cancer Council – Understanding complementary therapies, search at www.cancercouncil.com.au

• Cancer Research UK – Meditation, search at www.cancerresearchuk.org

• Memorial Sloan Kettering Cancer Center (MSKCC) – Breathing exercises to

  prepare for procedures (includes video), search at www.mskcc.org

• MSKCC – Mindfulness and stress reduction resources for people with cancer,

  search at www.mskcc.orgs

• Peter Mac – Can Sleep, free to download, search at www.petermac.org

SEXUALITY

• Ovarian Cancer Australia – Sexuality after ovarian cancer, search at www.ovariancancer.net.au

SUPPORT

• Ovarian Cancer Australia – To speak with an ovarian cancer nurse call 1300 660 334 or email support@ovariancancer.net.au

SURVIVORSHIP

• Australian Cancer Survivorship Centre www.petermac.org/cancersurvivorship

• Australian Cancer Survivorship Centre – Survivorship care plans, search at

  www.petermac.org

Ovarian Cancer Australia wishes to thank AstraZeneca for its assistance in funding this important resource.

We are especially grateful to the women who participated and provided their honest and moving words throughout the booklet. We would also like to thank the following women with lived experience and health professionals for their enthusiastic involvement in the review of this resource and for sharing their expertise and sincere and important stories.

• Chris Baggarley – Woman with lived experience

• Pat McAninly – Woman with lived experience

• Stephanie Ciempka-Kaufhold – Woman with lived experience

• Donna Jones – Woman with lived experience

• Dr Antonia Jones – Gynaecological Oncologist MBBS BMedSci FRANZCOG CGO, Royal Women’s Hospital and Mercy Hospital for Women

• Bethany Crowe – McGrath Metastatic Breast Cancer Nurse and Nurse Researcher, Princess Alexandra Hospital

• Helena Reynolds – Senior Social Worker, Fiona Stanley Hospital

• Jessica Freeman – Accredited Exercise Physiologist

• Nicole Kinnane – Nurse Consultant Gynaecology, Peter MacCallum Cancer Centre Project Manager, Australian Cancer Survivorship Centre

• Georgie McKenzie – Support nurse and resource lead, Ovarian Cancer Australia

• Bridget Bradhurst – Support nurse, Ovarian Cancer Australia

• Hayley Russell – Senior Research Manager, Ovarian Cancer Australia

• Veronica Perera – Ovarian Cancer Australia, Communications specialist

• Rosemary Moore – Writer

• Annie Angle – Specialist Oncology/Palliative Care Nurse, Health Writer

  Photographed: Jo, Julie, Hannah, Andrea, Sabrina and family