Borderline Ovarian Tumours

What is a borderline ovarian tumour?

Ovarian cancer develops when cells grow uncontrollably in and around the ovaries and fallopian tubes, and if left untreated, they can spread to other organs.

Borderline ovarian tumours (BOT’s) arise from the same type of abnormal cells, but they do not grow as fast, and they rarely spread. They are not considered cancerous, but in rare situations they can become cancerous. 

BOT’s are most common in people between the ages of 20 and 40 and make up approximately 15% of all epithelial ovarian tumours.

It can be confusing to be given a diagnosis of a BOT because you are treated by cancer specialists. Although this is not a cancer diagnosis, it can still be a very distressing experience and it is important to acknowledge these emotions and the support that you may need during this time.

Types

There are several types of BOT’s and these differ depending on the appearance of the cells under a microscope. The most common types are serous and mucinous. About half of all BOT’s are serous, while mucinous BOTs account for around 45%.

Other, less common types include:

• borderline Brenner

• endometrioid

• seromucinous

• clear cell

Due to the slow growing nature of BOT’s, the majority of people are diagnosed in the early stages of the disease (Stage 1). This means the tumour is confined to the ovaries and has not spread anywhere else in the body. Removing the tumour with surgery will usually cure it. It is rare they would ever come back.

Stages

Stages

Doctors classify BOTs into four stages, according to size, location and whether or not the tumour has spread elsewhere in the body. The four stages are:

• Stage 1: Early stage and the tumour is located within one or both ovaries.

• Stage 2: The tumour cells have spread to nearby tissues in the pelvis, such as the:

  • fallopian tubes

  • uterus

  • outside surface of the bladder

  • outside surface of the rectum

• Stage 3: Means the tumour has spread into the abdominal cavity and possibly lymph nodes.

• Stage 4: Advanced stage, in which tumour cells have spread to distant organs in the body such as the inside of the rectum or bladder, lungs or liver.

Symptoms

Early stage, small borderline ovarian tumours don't usually cause symptoms. Although, your doctor may find the tumour while you're having tests for something else. Larger or more advanced borderline tumours can cause symptoms such as:

• pain or a feeling of pressure in the pelvic and/or abdominal area

• abdominal swelling

• pain during or after sex

• vaginal bleeding not related to your period

It started with extreme tiredness and fatigue. I would wake up from an 8 hour or longer sleep still very tired. This extreme fatigue and tiredness prompted me to see my GP. Along with this concern, I also spoke about a subtle and dull abdominal pain, with occasional random sharp pains. It had been progressively getting worse

Diagnosis

Diagnosing a BOT involves several steps. Firstly, your GP would need to take a medical history, examine you, and find out if you have any symptoms. If your doctor has concerns, they will likely do a pelvic examination and possibly a cervical screening test to assess the health of your cervix. To gain a definite diagnosis you would need to have further tests including a:

• transvaginal ultrasound

• CT scan

• Possibly a biopsy depending on the scan results

• CA-125 blood test that looks for markers of cancer and other conditions

Cancer never really crossed my mind; I was expecting the results to be endometriosis or a benign cyst. After all I just turned 21. This condition isn’t common in people as young as myself

Treatment

Treatment for BOT’s depends on the stage of the disease at diagnosis. Surgery is usually the only treatment required.  However, the extent of surgery will depend on:

• Where the tumour is and whether it has spread

• Whether you want to have children (fertility preferences)

• Where possible and safe, treatment will aim to preserve fertility. 

Your doctor will discuss your options with you. For many women, surgery may mean removing:

• one or both ovaries and fallopian tubes (BSO – bilateral salpingo oophorectomy)

• the uterus, including the cervix (total hysterectomy)

This operation may be performed through a cut on your abdomen or via a keyhole (laparoscopic) approach. If you have a mucinous type of BOT, your doctor may also take out your appendix. This is because these types of tumours can sometimes start in the appendix and spread to the ovary.

Most women are cured with surgery and the tumour will never come back. But if it does your doctor will discuss possible further surgery you may need and other treatments.

Follow up

Follow up appointments are to check how you are doing and whether or not you have any problems after your treatment. Depending on the type of tumour and treatment you had, your specialist doctor (Gynae oncologist) may follow you up every six months for 2 years, then yearly for a total of 5 years. At these appointments you may need to have ultrasound and CA125 blood tests. 

My journey through all these appointments was difficult and emotional for me. However, my mum and a few family members were there to support me through the entire process. My mum was there to hold my hand through every appointment and surgery both physically and emotionally. I am now 3 years post diagnosis; free and clear from Borderline Ovarian Tumours.

Support

Being diagnosed with a borderline ovarian tumour can cause confusion and fear. It is not uncommon to have a wide range of emotions when you are diagnosed. Although borderline ovarian tumours are not cancerous, you may experience fear of recurrence and concerns about loss of fertility, early menopause, sexuality, body image and relationships.

If you are experiencing any of these issues and feel that you could benefit from additional support, we recommend speaking with your specialist doctors or nurses. Your GP or local doctor can also assist you to link in with additional local support services that may be helpful, such as a community counsellor or psychologist.

If you are unsure about any of the information you have read, and would like to speak with one of our support nurses, please don't hesitate to contact the OCA helpline on 1300 660 334 (Monday-Friday during business hours AEST)

This diagnosis was confusing, a little isolating and difficult to grasp. I wish I had used some of the resources provided by OCA; however, I was reluctant and unsure about me belonging. I read some stories similar to mine published by OCA and other resources, to find I wasn’t alone in this thinking; it made my journey feel less isolating.