Germ cell ovarian cancer

Germ cell tumours of the ovary are rare. They usually affect younger women and most can be cured. Many types of germ cell tumours are not cancer (benign), but some are cancer (malignant).

The symptoms can include:

  • pain or a feeling of pressure in the pelvis or tummy
  • a feeling of fullness or gradual swelling of the tummy
  • irregular periods or signs of pregnancy
  • high temperatures (fevers), chills, feeling or being sick and pain in the abdomen.

Speak to a doctor if you have any of these symptoms. They may refer you to hospital for blood tests and scans.

Germ cell ovarian cancer is usually treated with surgery and sometimes chemotherapy. After you finish your treatment, you will have regular check-ups. If you notice any symptoms in between these appointments, let your doctor know.

Sometimes treatments cause long-term or permanent side effects that may affect:

  • fertility
  • sex life
  • heart or lung health.

Your cancer team will explain if there is a risk of long-term side effects before you have treatment. Ask them if you need more information or support.

What is germ cell ovarian cancer?

Germ cell tumours are a rare type of ovarian cancer. They can affect people of any age, but are more common in women under the age of 20.

It is best to read this information with our general information about ovarian cancer. We also have information about germ cell ovarian tumours for teenagers and young adults.


The ovaries and germ cells

The ovaries are two small, oval-shaped organs in the pelvis. The pelvis is the area between the hips in the lower part of the tummy. The ovaries are part of the female reproductive system. This is the system involved in making eggs, having sex, carrying a baby and giving birth. It also includes the fallopian tubes, womb (uterus), cervix and vagina.

Germ cells are found in the ovary. They are the cells that develop into eggs.

The ovaries
The ovaries

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Normally, from puberty to menopause, one of the ovaries releases an egg once a month. The egg passes down the fallopian tube to the womb. If the egg is not fertilised by a sperm, it passes out of the womb as part of the monthly period.

The ovaries also produce the female hormones oestrogen and progesterone. These hormones help control the reproductive system. As you get older, the ovaries make less of these hormones. The ovaries stop releasing eggs each month and periods stop. This is known as the menopause. It means you cannot get pregnant anymore. It usually happens naturally between your mid-40s and mid-50s.


Types of germ cell ovarian tumour

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

Benign germ cell ovarian tumours

Most germ cell ovarian tumours are not cancer. These tumours are also called dermoid cysts or mature teratoma. Usually, an operation to remove the tumour is the only treatment needed. 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
  • immature teratoma
  • yolk sac tumours
  • mixed germ cell tumours
  • choriocarcinoma
  • embryonal carcinoma
  • polyembryoma.


Causes of germ cell tumours

We do not fully understand what causes germ cell tumours. Germ cells are a normal part of the ovary, but sometimes changes in these cells make them divide and grow too quickly. This causes the cells to form a tumour.


Signs and symptoms of germ cell ovarian cancer

Symptoms can include:

  • pain or a feeling of pressure in the pelvis or tummy
  • a feeling of fullness or gradual swelling of the tummy
  • irregular periods or signs of pregnancy
  • high temperatures (fevers), chills, feeling or being sick and pain in the abdomen.

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


Diagnosing germ cell ovarian cancer

You usually start by seeing your GP. They will ask about your symptoms and examine you. They will feel your pelvis and tummy, and may do an internal (vaginal) examination. They may arrange for you to have an ultrasound scan to look at your ovaries.

Some germ cell tumours make chemicals called tumour markers. You may have blood tests to look for this type of chemical. The main tumour markers made by germ cell tumours are:

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

If your GP is unsure what the problem is, or thinks your symptoms could be caused by cancer, they will refer you to a hospital specialist.

At the hospital, the specialist doctor will ask you about your symptoms and general health. They will examine you again and arrange any further tests you need.

Other tests may include:


Staging of germ cell ovarian cancer

The stage of a cancer describes its size, position and if it has spread from where it started. Knowing the stage helps your doctors plan the best treatment for you.

Doctors use the FIGO system to stage all types of ovarian cancer. We have detailed information about staging ovarian cancer.


Treating germ cell ovarian cancer

A team of specialists plan your treatment with you. Your plan will depend on your test results, the stage of the cancer and your general health. Your specialist doctor or nurse will talk with you about the best treatment and any possible side effects. Treatment for germ cell ovarian cancer is usually successful. Most people are cured.

Germ cell ovarian cancer is usually treated with surgery. For a very early-stage germ cell tumour, you may not need any other treatment. But you may need close monitoring after surgery to make sure the cancer does not come back. This can involve having regular blood tests and scans. Doctors sometimes call this surveillance.

Some people have chemotherapy after surgery to reduce the risk of cancer coming back.

If the cancer has spread outside the ovary, your doctor might advise having chemotherapy first to make surgery easier. Because chemotherapy usually works so well for germ cell cancers, it may mean you need less surgery. This can help preserve your ability to have children (fertility). You will have a CT scan after chemotherapy to check how well treatment has worked. If there are still signs of cancer, you may need further surgery.

Chemotherapy is also given for cancer that has come back after treatment. Radiotherapy is rarely used for germ cell ovarian cancer.

It is natural to worry about having treatment. Talking to your doctor or nurse can help. The thought of having treatment that may make you infertile can be upsetting. Your specialist doctor or nurse will explain what to expect and answer any questions before your treatment starts.

Surgery

Your surgeon will explain your options for surgery. Most people will have an operation to remove the affected ovary and fallopian tube (called a unilateral salpingo-oophorectomy). This is often the only surgery needed, and you should still be able to have children.

If the cancer has spread further, some people have chemotherapy first. This helps shrink the cancer so that they can have this operation.

Sometimes, the surgeon may need to remove both ovaries, both fallopian tubes and the womb (called a total abdominal hysterectomy with bilateral salpingo-oophorectomy). Because the ovaries and womb have been removed, it means having children naturally is no longer possible. It also means you will start your menopause. This type of surgery is less common.

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

Chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Chemotherapy may be given:

  • before surgery to shrink the cancer
  • after surgery to reduce the risk of the cancer coming back
  • to treat cancer that has spread or that has come back after previous treatment.

The most common chemotherapy drugs used to treat germ cell tumours of the ovary are:

  • bleomycin
  • etoposide
  • cisplatin.

These drugs are usually given together in a combination called BEP. They are given as a drip into a vein (intravenously). Sometimes bleomycin is given as an injection instead.

You have the combination every three weeks and have bleomycin again in between. These three weeks make up a cycle. Most people have between three and four cycles.

We have more information about having chemotherapy and different chemotherapy drugs.


Effects after treatment for germ cell ovarian cancer

Treatment for germ cell ovarian cancer is usually successful and most people are cured. But some people will have effects after treatment that are permanent or that start months or years after treatment. These are called long-term or late effects.

Early menopause

Most people who have treatment for germ cell ovarian cancer do not go through the menopause. But if you have surgery to remove both the ovaries, this will bring on the menopause straight away. Chemotherapy may sometimes cause it more gradually.

Some of the main physical effects of the menopause are:

  • hot flushes
  • vaginal dryness
  • lowered sex drive (libido)
  • mood changes.

This can be difficult, particularly when you are already coping with cancer. You can have treatment and support to cope with any symptoms and the emotional effects of early menopause. You can also have treatment to protect you from the long-term effects of menopause, such as brittle bones (osteoporosis) and heart disease.

You may be offered:

  • advice and support from your GP or a specialist who treats women with early menopause
  • treatment and advice to help you cope with symptoms
  • hormone replacement therapy (HRT) or a type of hormonal contraceptive to prevent long-term effects.

Your doctor will explain the possible risks and benefits of any treatment to you. Some women cannot take HRT safely because of the type of cancer they have.

Fertility

Treatment for germ cell ovarian cancer may affect your fertility (ability to get pregnant). This is not common, but your specialist doctor or nurse should talk to you about this before you have treatment. Try to ask any questions you have, so you know what to expect.

Doctors may not be able to predict exactly how your fertility will be affected. Your age and treatment plan can help give an idea of your individual risk. In most cases, it is possible to reduce the effects of treatment on your fertility.

If you have had only one of your ovaries removed, the remaining ovary will continue to produce eggs and your fertility should not be affected. If both ovaries are removed, it will not be possible to get pregnant naturally and you will start your menopause straight away.

If you have chemotherapy, it may affect your remaining ovary. This may cause your periods to stop or become irregular. Once chemotherapy is finished, your periods should go back to normal. But this can take several months.

If there is a risk your fertility may be affected, you can ask to be referred to a fertility expert before starting treatment. This may also be useful if you are worried about your fertility after treatment.

We have more information about cancer and fertility.

Coping with sexual changes

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.

Your specialist nurse can give you advice or arrange expert support if needed. Or you might find it helps to talk to our cancer support specialists.

We have more information about cancer and your sex life.

Lung health

After treatment with the chemotherapy drug bleomycin, breathing higher doses of oxygen for several hours can cause lung problems. If you need to have a general anaesthetic or oxygen therapy for any reason, always tell the doctor that you have had bleomycin.

Scuba diving is not recommended after treatment with bleomycin.

Heart health

Some types of chemotherapy can raise your risk of heart problems many years later. Some people will have regular follow-up appointments to check their heart health after treatment. Ask your cancer doctor or GP for more advice about your situation.

You should also talk to your doctor if you are thinking about having a baby after treatment. Pregnancy and giving birth can put pressure on your heart. They may arrange for you to see a cardiologist for advice before or during your pregnancy. You may also have extra tests to check your heart health while you are pregnant.

We have more information about heart health and cancer.


Follow-up after treatment for germ cell ovarian cancer

After you finish your treatment, you will have regular check-ups, bloods tests, and possibly scans or x-rays. You may have these for several years. You may have more appointments straight after you finish treatment, but they usually get less often as time goes by. If you have any problems, or notice any new symptoms in between your appointments, tell your doctor or nurse specialist as soon as possible.


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. You can also call our cancer support specialists free on 0808 808 00 00.