What is germ cell ovarian cancer?

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

The ovaries are two small, oval-shaped organs in the pelvis. Germ cells are found in the ovaries. They are the cells that develop into eggs.

Types of germ cell ovarian tumour

There are several types of germ cell tumour that can start in 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.

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.

Causes and risk factors of germ cell ovarian cancer

We do not know what causes cancer to start in the ovary. But we know some of the risk factors that may increase the chances of it developing.

Having one or more risk factors does not mean you will get cancer. Also, having no risk factors does not mean you will not develop cancer.

We have more information about the causes and risk factors of ovarian cancer.

Tests and diagnosis for 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 also arrange for you to have:

  • Blood tests
    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).
  • An ultrasound scan
    you may have ultrasound scans to check the organs inside the abdomen (tummy area) and the pelvis.

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. This specialist is usually a gynaecologist (a doctor who treats female reproductive system problems).

At the hospital

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

    This is when the doctor removes a small sample (biopsy) from the lump or abnormal area. The sample is then sent to the laboratory and looked at under a microscope.

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.

Grading describes how the cancer cells look under the microscope compared with normal cells. 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.

Some treatments may affect your fertility (ability to get pregnant). This is not common. But your cancer doctor or specialist nurse should talk to you about this and anything else you should consider when making treatment decisions.

Your treatment will depend on your test results, the stage of the cancer and your general health. Your cancer doctor or specialist nurse will explain the different treatments and their side effects.

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

Surgery for germ cell ovarian cancer

Germ cell ovarian cancer is usually treated with 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. You should still be able to have children afterwards.

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.

If the cancer has spread further, some people have chemotherapy first to make surgery easier. Because chemotherapy usually works 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.

Sometimes, the surgeon may need to remove both ovaries, both fallopian tubes and the womb. This is 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 types of surgery for ovarian cancer and what to expect before and after your operation.

Chemotherapy for germ cell ovarian cancer

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

  • before surgery to shrink the cancer and make surgery easier
  • 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:

These drugs are usually given together in a combination called BEP.

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

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 you usually have them 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.

Late 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.

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.

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 it 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.

Sex

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 health

Some types of chemotherapy can raise your risk of heart problems many years later. Some people 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.

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.

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 on leading a healthy lifestyle after treatment.

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