Germ cell ovarian cancer

Germ cell tumours of the ovary are rare. They usually affect younger women and most can be cured.

The symptoms 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.

There are different types of ovarian germ cell tumours that can be treated in different ways. Treatment usually involves a combination of surgery and chemotherapy.

This can be a worrying time and you might find it helpful to talk things through with someone close to you.

What is germ cell ovarian cancer?

This information is about a rare type of ovarian cancer that usually affects young women. It should be read with our general information about ovarian cancer, which has more information about the tests and some of the treatments mentioned here. We also have information about germ cell ovarian cancer for teenagers and young adults.


The ovaries and germ cells

The ovaries are two small, oval-shaped organs in the pelvis (the area between the hips in the lower part of the tummy). They are part of a woman’s reproductive system. This is the system involved in having sex, making eggs, carrying a baby and giving birth.

In women of childbearing age, one of the ovaries produces an egg each month. The egg travels down the fallopian tube to the womb (uterus). If the egg isn’t fertilised by a sperm, it breaks down and is shed, along with the lining of the womb, as part of the monthly period.

The ovaries also make the main female hormones oestrogen and progesterone. As you get older, the ovaries make less of these hormones and stop producing eggs. Your periods gradually stop. This is called the menopause.

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

The ovaries and their surrounding structures
The ovaries and their surrounding structures

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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 won’t grow back.

Rarely, the surgeon finds signs of cancer in a benign tumour when they remove it. If this happens, you might need more treatment.

Malignant germ cell ovarian cancers

Rarely, a germ cell ovarian tumour is made up of cancer cells. These cancers are named after what the cells look like under the microscope.

The different types are:

  • dysgerminomas
  • yolk sac tumours
  • immature teratoma
  • mixed germ cell tumours
  • choriocarcinoma
  • embryonal carcinoma
  • polyembryoma.

The type of cancer gives the doctor an idea of how it may develop.


Causes of germ cell tumours

We don’t 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.


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 conditions. But it’s 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 carry out an internal (vaginal) examination. They may arrange for you to have a blood test, or an ultrasound scan to look at your ovaries.

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.

Several tests may be used to diagnose germ cell ovarian tumours:

Internal (vaginal) examination

This is done to check for any lumps or swelling in the ovaries or womb. It takes about five minutes.

You lie on a couch, with your feet drawn up and knees apart. The doctor places one or two gloved fingers into your vagina, while pressing down on your lower tummy with their other hand.

The doctor may put a speculum into the vagina. This holds the vagina open, so they can check that everything looks normal inside.

An internal examination shouldn’t be painful, but it may be uncomfortable. If you prefer, you can ask for a female doctor to do the internal examination.

Blood tests

Some cancers 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-fetaprotein), hCG (human chorionic gonadotrophin) and LDH (lactate dehydrogenase).

Ultrasound scan

This test uses soundwaves to build up a picture of the organs inside the abdomen and the pelvis. There are two types of ultrasound that can be used to check the ovaries for abnormalities:

Pelvic ultrasound

You’ll be asked to drink plenty of fluids before the test so your bladder is full. This helps give a clearer picture.

A gel is spread on to your tummy. A small device, which produces soundwaves, is rubbed over the area. A computer converts the soundwaves into a picture.

Vaginal ultrasound

A probe with a rounded end is put into your vagina. The probe produces soundwaves, which are converted into a picture by a computer. Although this type of ultrasound scan may sound uncomfortable, many women find it more comfortable than having a pelvic ultrasound, as you don’t need to have a full bladder.

CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. This scan takes around 30 minutes and is painless. We have more detailed information about having a CT scan.

Laparoscopy

Sometimes, you will need a simple operation called a laparoscopy to examine inside the abdomen. While you are under general anaesthetic, the surgeon makes a small cut (about 1cm long) in the lower abdomen. They put a thin tube with a light and camera (laparoscope) through the cut and use this to look at the ovaries. If the ovary looks abnormal, the surgeon may be able to remove it in this way. More often, the surgeon will make a slightly larger cut to remove the ovary.

If the ovary has been removed, a pathologist (doctor who specialises in analysing cells) looks at it under the microscope. They can then tell whether it’s a germ cell tumour and if so, what type it is.

Laparoscopy
Laparoscopy

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Staging of germ cell ovarian cancer

The stage of a cancer describes its size and whether it has spread. Knowing the stage helps doctors decide on the best treatment for you.

Your doctor may describe germ cell ovarian cancer using the FIGO staging system.

The FIGO system

The FIGO system uses a number between 1–4 to describe how far the cancer has spread. For example, stage 1 means that one or both ovaries are affected by the cancer. Stage 4 means the cancer has spread to other organs.

The letters a, b or c can be added after the number to give more detail about how the cancer has spread and which areas of tissue are involved. For example, stage 1a means the cancer is in one ovary. Stage 1b means the cancer is in both ovaries.

To keep things simple, your doctor may use the following words to describe the stage of a germ cell ovarian cancer:

  • Early or local describes a small cancer that hasn’t spread.
  • Locally advanced means cancer that has spread into areas near the ovary.
  • Local recurrence means cancer that has come back in the same area after treatment.
  • Advanced or metastatic describes cancer that has spread to other parts of the body, such as the liver or lungs.


Treating germ cell ovarian cancer

The treatments for all stages of germ cell ovarian cancer have improved. Most women can now be completely cured. Your treatment will depend on the stage, type and position of the cancer as well as your general health. Your specialist doctor or nurse will explain the best treatment for you and any side effects that are likely.

Germ cell ovarian cancer is usually treated with surgery. For very early stages of cancer, this may be the only treatment needed. However, chemotherapy may be given after surgery to reduce the risk of cancer coming back. Chemotherapy is also given for cancer that has come back after treatment.

Radiotherapy is rarely used, because it is likely to cause infertility. This means a woman may not be able to become pregnant after treatment. Chemotherapy works as well as radiotherapy and is less likely to cause this.

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

The surgeon makes a cut in your tummy and removes the affected ovary and fallopian tube. This operation is called a unilateral salpingo-oophorectomy. Often, this is the only surgery needed and you should still be able to have children.

But sometimes, to get all the cancer or reduce the risk of it coming back, the surgeon needs to remove both ovaries, both fallopian tubes, and your womb. This operation is known as a totalabdominal hysterectomy with bilateral salpingo-oophorectomy. It causes infertility and menopause.

We have more information about the types of surgery used for ovarian cancer.

After surgery

How long you stay in hospital will depend on the type of operation you have. If you have a unilateral salpingo-oophorectomy, you may be able to go home after a few days. After a total abdominal hysterectomy, you are likely to be in hospital for 7–10 days. Your doctor will explain what to expect. They will give you instructions about avoiding heavy lifting or exercise and driving for some weeks after the operation.

Chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. This treatment may be given after surgery to reduce the risk of the cancer coming back. It may also be given 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 called BEP when they’re given together. They are given by injection into a vein (intravenously) every three weeks, for up to five doses.

Side effects of chemotherapy

The side effects depend on the drug or combination of drugs you are given. Your doctor or nurse will explain any treatment you are offered and what to expect.

Many chemotherapy drugs can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. Your doctor or nurse will give you advice about what to do if this happens.

Chemotherapy can also cause side effects such as feeling tired, a sore mouth, feeling sick (nausea) or being sick (vomiting), diarrhoea and hair loss. Let your doctor or nurse know about any side effects, as they can often prescribe drugs to reduce these. These side effects get better after treatment ends.

Rarely, chemotherapy can cause other long-term effects. Some drugs may make you infertile Other drugs increase your risk of developing another type of cancer years after treatment. Your doctor will discuss the risks of your treatment.

We have more information about the different chemotherapy drugs and about coping with the side effects of chemotherapy.


Fertility and the menopause after treatment for germ cell ovarian cancer

Treatment for germ cell ovarian cancer can sometimes affect your fertility (your ability to have children). When planning your treatment, your doctor will aim to do as little damage to your fertility as possible if this is important to you. Your specialist doctor or nurse should talk to you about this before treatment starts.

Doctors may not be able to predict exactly how your fertility will be affected. But your age and planned treatment 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 not, some women are referred to a fertility expert before starting cancer treatment. The fertility expert will discuss ways of increasing the chance of getting pregnant in the future (fertility preservation).

If you have had one of your ovaries removed, the remaining ovary will continue to produce eggs and your fertility won’t be affected. If both ovaries are removed, it won’t be possible to get pregnant naturally and you’ll immediately start your menopause.

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. However, this can take several months.

Some older women will start the menopause because of chemotherapy. If you start the menopause, your doctor may give you hormone replacement therapy (HRT) to help with menopausal symptoms. Your doctor can give you more advice about this.

It can be hard to cope with losing your fertility or becoming menopausal because of treatment. It may seem especially difficult when you’re already coping with cancer. Not knowing whether your fertility will come back can also be distressing.

Some women find it helpful to talk things over with a partner, family member or friend. Others may prefer to talk to a counsellor. Your GP or cancer specialist can arrange this. Many hospitals also have specialist nurses who can offer support, and fertility clinics usually have a counsellor you can talk to.

Talking to other women in a similar position may help you feel less alone. Some of the organisations listed in this information can help with this. They can also provide specialist advice and counselling. Or you can talk to people online. Our online community is a good place to talk to other women who may be in a similar situation. You can also talk things over with our cancer support specialists free on 0808 808 00 00, Monday–Friday, 9am–8pm.

We have more information about cancer treatment and fertility, as well as support for young people.


Follow-up after treatment for germ cell ovarian cancer

After your treatment is completed, you will have regular check-ups, bloods tests and possibly scans or x-rays. These may continue for several years. If you have any problems, or notice any new symptoms between your appointments, let your doctor know as soon as possible.


Your feelings about germ cell ovarian cancer

You may have many different emotions, from shock and disbelief to fear and anger. At times, these emotions can be overwhelming and hard to control. These feelings are natural and it's important to be able to express them. 

Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to family or friends, while others prefer to seek help from people outside their situation. Sometimes it’s helpful to share your experiences at a local cancer support group. Some people prefer to keep their feelings to themselves. There is no right or wrong way to cope, but help is available if you need it. 

You may find it helpful to contact the following organisations for more support:

  • British Infertility Counselling Association – a charity dedicated to providing the highest standard of counselling and support to people affected by infertility. You can use the website to find a counsellor in your area.
  • Infertility Network UK – provides information, support, telephone counselling and helpful contacts for people with fertility difficulties.
  • Ovacome – a national support group for everyone involved with ovarian cancer, including patients, families, friends, carers and health professionals. The Ovacome Support Line offers information and emotional support to women and their families, friends and carers, as well as health professionals.
  • The Daisy Network – a support group for women who have an early menopause. The website gives information about premature menopause and related issues. It also has a live forum where members can talk to each other and share experiences.

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Treating

ovarian cancer and what to expect

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with and after treatment for ovarian cancer

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