What is germ cell ovarian cancer?

Germ cell ovarian cancer is a rare type of ovarian cancer. It can happen at any age but is more common under the age of 40. Germ cell ovarian cancer can usually be cured.

Germ cells are found in the ovaries The ovaries are 2 small, oval-shaped organs in the pelvis. The pelvis is the lower area between the hips. Germ cells are the cells that develop into eggs.

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

Lymph nodes in the abdomen and pelvis

The diagram the female abdomen and pelvis from the front. It shows a network of fine tubes and small oval shapes. These are the pelvic lymph nodes. — Image: The diagram shows the lower abdomen, pelvis and the top of the legs from the front. A narrow opening is shown between the legs. This leads into a narrow space shown inside the pelvis. This space is called the vagina. Above the vagina the space narrows until both sides almost touch. Then it opens again to form a hollow pear-shaped organ called the womb. The surfaces of the two sides are coloured red where they narrow between the vagina and the womb. The narrow area is the cervix. At either side of the upper end of the womb are two small solid oval shapes. These are the ovaries. They are connected to either side of the womb by narrow tubes called the fallopian tubes. A network of fine lines connecting small oval shapes is shown. This is the lymphatic system and lymph nodes. This network enters the image just above the tummy button. It splits into 2 main streams. These streams are shown sitting over each ovary, down each side of the womb and into the area each side of the vagina at the top of the legs.

Types of germ cell ovarian tumour

Several types of germ cell tumour can start in the ovary. Most germ cell tumours are not cancer. These are called benign tumours.

But some tumours are cancer. These are called malignant tumours.

Benign germ cell ovarian tumours

These tumours are also called dermoid cysts or mature teratomas. Usually, the only treatment needed is surgery to remove the tumour. Once the tumour has been removed, it will not grow back.

Sometimes after surgery doctors find cancer cells in a tumour that looked benign. This is rare.

Malignant germ cell ovarian tumours

There are different types of malignant germ cell tumour. These are types of cancer. They have different names depending on how the cells look under the 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 in the pelvis or tummy area (abdomen) – this is caused by the tumour
swelling of the tummy area
irregular periods
pregnancy-like symptoms, such as breast tenderness or feeling sick – the tumour may make proteins similar to those produced in early pregnancy
a high temperature (fever).

Many other conditions can cause these symptoms. 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 tests below.

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

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)

CA125.
Ultrasound scans

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

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 will explain any further tests you need. You may have the following tests:

CT scan

A 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 the body.
Biopsy

A biopsy is when doctors remove a small piece of tissue or a sample of cells from an area of the body. This is then sent to a laboratory, where it is checked under a microscope. Doctors usually do a biopsy using a CT or ultrasound scan to guide them.

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

Related pages

Just been diagnosed?

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 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. They are called a multidisciplinary team (MDT).

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

The main treatments 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
whether you would like to get pregnant in the future.

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 can affect your ability to get pregnant (fertility). Your doctor and nurse will talk to you about this. If treatment may affect your fertility, 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 treatment as part of a clinical trial.

Surgery for germ cell ovarian cancer

The main treatment for germ cell ovarian cancer is surgery. Surgery is usually all you need if you have a very early stage cancer. This means stage 1a dysgerminoma or stage 1a low grade teratoma.

You usually have the affected ovary and fallopian tube removed. This is called fertility-sparing surgery. You should still be able to get pregnant 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 will have chemotherapy after surgery. This is to treat any cancer cells left behind.

Sometimes during surgery, the surgeon may take samples of tissue from different parts of the pelvis, tummy and lymph nodes. These samples are called biopsies. They 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. It will also cause the menopause to start.

Usually, a diagnosis of germ cell ovarian cancer is only made after surgery. So sometimes to start with, only the affected ovary will be removed and sent to be tested. Sometimes you may need a second operation to make sure the cancer has been removed.

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 will see a specialist doctor at a clinic regularly. They may examine you. You have blood tests to check your tumour markers. If you have had fertility-sparing surgery, you will also have 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 will 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 – this is called adjuvant chemotherapy
treat germ cell ovarian cancer that has come back.

The most common chemotherapy drugs for treating 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 having chemotherapy and its side effects.

Related pages

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 some side effects may be permanent or start months or years later. These are called long term or late effects. Your cancer doctor or specialist nurse can give you more information about these.

Early menopause

Treatment for germ cell ovarian cancer does not usually cause the menopause. If you have surgery to remove both ovaries, this will cause the menopause to start 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 the menopause. But periods may stop or become irregular during treatment. Chemotherapy can cause a permanent menopause, but it may happen more gradually than after surgery to remove both ovaries.

Fertility

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

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

Chemotherapy may cause your periods to stop or become irregular. After chemotherapy 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 cancer doctor will usually advise you not to get pregnant within 2 years of finishing treatment.

Sexual wellbeing after germ cell ovarian cancer

Cancer and cancer treatment can cause physical and emotional changes that may affect your sexual wellbeing. 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 are usually ways to help.

Booklets and resources

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 cancer doctor. They may arrange for you to see a heart specialist (cardiologist) for advice before or during pregnancy. Pregnancy and giving birth can put pressure on your heart.

If you have had chemotherapy with 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.

Wellbeing 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.

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

call the Macmillan Support Line for free on 0808 808 00 00
chat to our specialists online.
visit our Online Community ovarian cancer forum to talk to people who have been affected by germ cell ovarian cancer, share your experience, and ask questions.
visit our forum for people diagnosed with cancer at a young age, to chat with other people in a similar situation.

Other organisations who offer information and support

You may find the following organisations 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.
Helpline 0808 802 0019
Ovacome

Ovacome offers information and support for anyone affected by ovarian cancer, including patients, families, friends, carers and health professionals.
Tel 0800 008 7054
The Robin Cancer Trust

The Robin Cancer Trust educates and raises awareness of germ cell testicular and ovarian cancers, providing free materials to newly diagnosed young adults.
Target Ovarian Cancer/div>

Target Ovarian Cancer offers information and support to anyone affected by ovarian cancer. Call the support line on 0808 802 6000.

References

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

Ovarian cancer: recognition and initial management. Clinical guideline [CG122] Published: 27 April 2011 Last updated: 02 October 2023 www.nice.org.uk/guidance/cg122 (accessed May 2024)

Ovarian cancer: identifying and managing familial and genetic risk. NICE guideline [NG241]. Published: 21 March 2024 www.nice.org.uk/guidance/ng241 (accessed May 2024)

A. González-Martín, P. Harter, A. Leary, D. Lorusso, R. E. Miller, B. Pothuri, I. Ray-Coquard, D. S. P. Tan, E. Bellet, A. Oaknin & J. A. Ledermann, on behalf of the ESMO Guidelines Committee. Newly diagnosed and relapsed epithelial ovarian cancer: ESMO Clinical Practice Guideline for diagnosis, treatment and follow-up. Published August 17, 2023. www.annalsofoncology.org/article/S0923-7534(23)00797-4/fulltext (accessed May 2024)

Cancer Information Development team

Author

Dr Alexandra Taylor

Reviewer

Consultant Clinical Oncologist

Royal Marsden Hospital, London

Date reviewed

Reviewed: 01 March 2025

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Next review: 01 March 2029

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