What is 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.

Types of germ cell ovarian tumour

There are several types of germ cell tumour that can start in the ovary. Most germ cell tumours are not cancer (benign). But some are cancer (malignant).

Benign germ cell ovarian tumours

Most germ cell ovarian tumours are benign. These tumours are also called dermoid cysts or mature teratomas. Usually, the only treatment needed is an operation to remove the tumour. Once the tumour has been removed, it will not grow back. 

Rarely, after surgery, doctors may find cancer cells in a tumour that looked benign.

Malignant germ cell ovarian tumours

Malignant germ cell ovarian tumours are made up of cancer cells. These cancers are named after what the cells look like under a microscope.

The different types are:

  • dysgerminomas
  • yolk sac tumours
  • immature teratomas
  • mixed germ cell tumours
  • choriocarcinomas
  • embryonal carcinomas.

Symptoms of germ cell ovarian cancer

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.

Causes and risk factors of germ cell ovarian cancer

Doctors do not know the causes and risk factors of germ cell ovarian cancer. They are not likely to be the same as for epithelial ovarian cancer.

Diagnosing germ cell ovarian cancer

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:

Blood 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).

Ultrasound scans

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

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:

  • CT scan

    CT scan takes a series of x-rays, which build up a 3D picture of the inside of the body.

  • MRI scan

    An MRI scan uses magnetism to build up a detailed picture of areas of your body.

  • Biopsy

    biopsy is when a doctor removes a small sample (biopsy) from the lump or abnormal area. They usually do this using a CT or an ultrasound scan to guide the needle.

  • PET-CT scan

    PET-CT scan is a combination of PET (positive emissions tomography) and a CT (computerised tomography) scan. A PET scan uses low dose radiation to measure the activity of cells in different parts of their body. You may have this done to find out more about the stage of the cancer.

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

Staging and grading of germ cell ovarian cancer

The results of your tests help your doctors find out more about the size and position of the cancer and whether it has spread. This is called staging. Your doctor will not know for certain the exact diagnosis and stage of a germ cell tumour until after surgery to remove the tumour.

Grading describes how the cancer cells look under the microscope compared with normal cells. Germ cell tumours are usually graded as either:

  • low grade – the cancer cells look very like normal cells
  • high grade – the cancer cells look very abnormal.

Knowing the stage and grade helps your doctors plan the best treatment for you.

We have more information about staging and grading of ovarian cancer.

Treatment for germ cell ovarian cancer

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 chemotherapyRadiotherapy is rarely used for germ cell ovarian cancer.

Your treatment will depend on:

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.

Surgery for germ cell ovarian cancer

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.

Monitoring (surveillance)

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 for germ cell ovarian cancer

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:

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.

After treatment for germ cell ovarian cancer

After treatment, you have regular check-ups, blood tests and possibly scans or x-rays. You may have these for several years but they get less often as time goes by.

If you have any problems, or notice any new symptoms in between your appointments, tell your specialist doctor or nurse as soon as possible.

Late effects after treatment for germ cell ovarian cancer

Treatment usually cures germ cell ovarian cancer. But sometimes certain side effects may be permanent or start months or years later. These are called long-term or late effects. Your doctor and nurse can give you more information about these.

Early menopause

Treatment for germ cell ovarian cancer does not usually cause menopause. If you have surgery to remove both ovaries, this will cause menopause straight away.

Doctors generally think hormone replacement therapy (HRT) is safe to take if you have had a germ cell tumour.

Chemotherapy for germ cell ovarian cancer does not usually cause a permanent menopause. If it does it may start more gradually.

Fertility

It is not common for germ cell ovarian cancer treatment to affect your ability to get pregnant (fertility). This is because it is usually possible to reduce the effects of treatment on your fertility. Your specialist doctor and nurse will talk to you about this before treatment. If there is a risk your fertility may be affected, you may be referred to a fertility expert.

If you have only 1 ovary removed, the other ovary will continue to produce eggs so your fertility should not be affected. If both ovaries are removed you will not be able to get pregnant and will start menopause straight away.

Chemotherapy may cause your periods to stop or become irregular. Once it has finished, your periods should go back to normal. But it can take several months. During this time you should continue to use contraception to avoid becoming pregnant.

Your sex life after germ cell ovarian cancer

Cancer and cancer treatment can cause physical and emotional changes that may affect your sex life. There is no right or wrong way to feel about having sex after your treatment. But if you are finding a change difficult to cope with, there is often something that can be done to help.

Heart and lung health

Some chemotherapy drugs may increase the risk of heart problems in the future. You may have tests to check your heart health after treatment. If you are thinking about having a baby, talk to your specialist doctor. They may arrange for you to see a cardiologist for advice before or during pregnancy. Pregnancy and giving birth can put pressure on your heart.

If you have bleomycin, breathing in higher doses of oxygen for several hours may cause lung problems. If at any time you need a general anaesthetic or oxygen therapy, tell the doctor that you have had bleomycin. Doctors do not recommend scuba diving after treatment with bleomycin.

Well-being and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive changes after treatment.

We have more information about leading a healthy lifestyle after treatment.

Getting support

Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.

There are also support organisations that you may find helpful:

  • Eve Appeal
    Eve Appeal offers information and support for anyone affected by gynaecological cancers. Also provides information about cervical screening and for trans, non-binary and intersex people. Call their helpline on 0808 802 0019.
  • Ovacome
    Ovacome offers information and support for anyone affected by ovarian cancer.
  • Target Ovarian Cancer
    Target Ovarian Cancer offers information and support to anyone affected by ovarian cancer. Call their helpline on 020 7923 5475.

Macmillan is also here to support you. If you would like to talk, you can: 

About our information

  • References

    Below is a sample of the sources used in our germ cell ovarian cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

    Ray-Coquard I et al. Non-epithelial ovarian cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology, 2018; Volume 29, Supplement 4. Available from www.esmo.org/guidelines (accessed July 2021).

    D Gershenson et al. Treatment of malignant germ cell tumors of the ovary. Uptodate 2021. (topic last updated: Jun 26, 2020). 

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We try to make sure our information is as clear as possible. We use plain English, avoid jargon, explain any medical words, use illustrations to explain text, and make sure important points are highlighted clearly.

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. Our aims are for our information to be as clear and relevant as possible for everyone.

You can read more about how we produce our information here.

Reviewed: 01 September 2021
Reviewed: 01/09/2021
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Next review: 01 September 2024
Next review: 01/09/2024