Germ cell ovarian cancer

Germ cell tumours are a rare type of ovarian cancer. They can happen at any age but are more common under the age of 20.

The ovaries are two small, oval-shaped organs in the pelvis. Germ cells are found in the ovaries. These are the cells that develop into eggs. Treatment usually cures germ cell tumours.

Germ cell ovarian cancer can affect anyone who has ovaries. This includes women, transgender (trans) men and people assigned female at birth.

Symptoms can include:

• pain or a feeling of pressure, caused by the tumour, in the pelvis or tummy area (abdomen)
• swelling of the tummy
• irregular periods
• pregnancy like symptoms – the tumour may make proteins similar to those produced in early pregnancy
• a high temperature (fever)
• chills
• feeling or being sick.

These symptoms can be caused by many other conditions. But it is important to have them checked by your GP.

If you have symptoms, your GP will ask about them and examine you. They will feel your pelvis and tummy and may do an internal (vaginal) examination.

They may arrange for you to have some of the following tests:

Some germ cell tumours make chemicals called tumour markers. These are released into the blood. Doctors can measure them with a blood test. You may have blood tests to check for these tumour markers:

• AFP (alpha-fetoprotein)
• hCG (human chorionic gonadotrophin)
• LDH (lactate dehydrogenase).

You may have ultrasound scans to check the organs inside the tummy area and the pelvis.

If your GP thinks your symptoms may be linked to cancer, they refer you to a gynaecologist at a hospital. A gynaecologist is a doctor who treats problems with the female reproductive system.

At the hospital, the gynaecologist will examine you. If you have not had a pelvic ultrasound, they will arrange this. They may take blood samples to check for tumour markers, and how well your kidneys and liver are working. You may also see a specialist nurse. They explain the further tests you need. You may have:

Waiting for tests results can be a difficult time. We have more information that may help.

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).

Treatment for germ cell ovarian cancer is usually successful. Most people are cured.

The main treatments used are surgery and chemotherapy. Radiotherapy is rarely used for germ cell ovarian cancer.

Your treatment will depend on:

• your test results
• the stage of the cancer
• your general health.

Your cancer doctor or specialist nurse will explain the different treatments and their side effects and anything else you should consider when making treatment decisions.

Treatment does not usually affect your fertility (being able to get pregnant). Your doctor and nurse will talk to you about this. If your fertility may be affected your doctor can refer you to a fertility specialist. They will talk about possible ways to preserve your fertility before treatment starts.

You may be offered some treatments as part of a clinical trial.

The main treatment for germ cell ovarian cancer is surgery. If you have a stage 1a dysgerminoma or stage 1a low-grade teratoma, surgery is usually all the treatment you need.

You usually have the affected ovary and fallopian tube removed. This is called fertility-sparing surgery. You should still be able to have children in the future. Surgery can sometimes be done using keyhole surgery (laparoscopy).

Even if the germ cell tumour has spread further, you should still be able to have fertility-sparing surgery. Your surgeon will remove as much of the cancer as possible. You have chemotherapy after surgery to treat any cancer cells left behind.

Sometimes during surgery, the surgeon may take samples of tissue (biopsies) from different parts of the pelvis, tummy and lymph nodes. These are examined in the laboratory to find out if the cancer has spread. This helps give the most accurate stage of the cancer.

If the cancer has spread further and you already have children, your surgeon may advise having both ovaries, both fallopian tubes and the womb removed. This type of surgery is less common. It means you will no longer be able to get pregnant and will start menopause.

We have more information about types of types of surgery for ovarian cancer and what to expect before and after your operation.

If you do not need chemotherapy after surgery, you will have regular appointments and tests to monitor the cancer. Doctors sometimes call this monitoring or surveillance.

You see the specialist doctor at a clinic regularly. They may examine you. You have blood tests to check your tumour markers and regular pelvic ultrasounds.

Monitoring continues for several years, but over time you will have appointments less often. If there are signs the cancer has come back, you start chemotherapy straight away. This means the cancer can still be cured.

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. You may have chemotherapy after surgery to:

• treat any cancer cells left behind
• reduce the risk of the cancer coming back (called adjuvant chemotherapy)
• treat germ cell ovarian cancer that has come back.

The most common chemotherapy drugs used to treat germ cell ovarian cancer are:

• bleomycin
• etoposide
• cisplatin.

You usually have these drugs together in a combination called BEP. You may have 3 or 4 cycles of BEP after surgery.

We have more information about  having chemotherapy and its side effects.

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We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

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