Germ cell ovarian cancer

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

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 malignant ovarian germ cell tumour. They can be treated in different ways, usually with a combination of surgery and 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.

This can be a worrying time and you might find it helpful to talk things through with family and friends, a health professional, or someone who has had a similar experience.

What is germ cell ovarian cancer?

Germ cell tumours are a rare type of ovarian cancer that usually affects young women. It is best to read this information with our general information about ovarian cancer, which has more detail 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 lower area between the hips). They are part of a woman’s reproductive system. This is the system involved in having sex, carrying a baby and giving birth.

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

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In women who have not been through menopause, one of the ovaries usually produces an egg each month. The egg travels down the fallopian tube to the womb (uterus). If it is not fertilised by a sperm, it is shed with the lining of the womb as a 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 and you start your menopause.

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


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
  • 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 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 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. An internal examination should not be painful, but it may be a bit uncomfortable. If you prefer, you can ask for a female doctor to do the internal examination. It normally takes about five minutes.

You lie on a couch, with your feet drawn up and knees apart. The doctor gently 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.

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). But not all germ cell tumours make tumour markers.

Ultrasound scan

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

  • Pelvic ultrasound - you will be asked to drink plenty of fluids before the test so your bladder is full. This helps give a clearer picture. The person doing the scan spreads a gel on to your tummy. They pass a small device that produces soundwaves over the area. A computer changes the soundwaves into a picture.
  • Vaginal ultrasound - the doctor gently puts a probe with a rounded end into your vagina. The probe produces soundwaves, which are changed into a picture by a computer. You do not need to have a full bladder for this scan, so you may find it more comfortable than a pelvic ultrasound.

Ultrasound-guided biopsy

This may be done if there are signs that the cancer may have have spread to other areas. A doctor uses an ultrasound scan to guide them to the area they want to take a sample of tissue from (biopsy).

CT scan

A CT scan uses x-rays to build a three-dimensional picture of the inside of the body. This helps the doctors to see whether the germ cell cancer has spread to other parts 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.

MRI (magnetic resonance imaging) scan

An MRI scan uses magnetism to build up a detailed picture of areas of your body. You may be given an injection of dye into a vein, to improve the images from the scan.

Laparoscopy

Sometimes, you will need a simple operation called a laparoscopy to examine inside the tummy. This is done under general anaesthetic, which means you will be asleep and cannot feel anything.

The surgeon makes a small cut in the lower tummy. They put a thin tube with a light and camera through the cut to look at the ovaries.

If the ovary looks abnormal, the surgeon makes a larger cut (laparotomy) to remove the whole ovary in one piece. Removing one ovary won’t make you infertile.

A pathologist (doctor who specialises in analysing cells) examines the ovary under the microscope. They can then tell whether it is a germ cell tumour and what type it is.

During the operation, the surgeon might also take some small tissue samples of different areas in your tummy. This helps doctors to stage the cancer.

Someone having a laparoscopy
Someone having a 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

Treatment for germ cell ovarian cancer is usually successful. Most women are cured. Your treatment will depend on the stage of the cancer as well as your general health. Your specialist doctor or nurse will talk with you about the best treatment and any possible side effects.

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 some women 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 women are advised to 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 will usually have surgery to remove it.

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, and 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

The surgeon makes a cut in your tummy and removes the 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. If fertility is important to you, your doctor will try to preserve this wherever possible.

Occasionally the surgeon may need to remove both ovaries, both fallopian tubes, and your womb. This operation is known as 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, because women with advanced cancer can often still be offered fertility-sparing surgery. This is because chemotherapy can work very well for this type of cancer.

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

After surgery

How long you stay in hospital depends on the type of operation you have. You can usually go home after a few 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. Chemotherapy 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 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.

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

Side effects can be distressing, so let your doctor or nurse know about any you have. They can often give you drugs or advice to help manage them. 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 and the options you have.


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. The appointments will be more regular straight after you finish treatment, but usually get less often as time goes by. If you have any problems, or notice any new symptoms in between your appointments, let your doctor know as soon as possible.


Fertility and the menopause after treatment for germ cell ovarian cancer

Treatment for germ cell ovarian cancer can sometimes affect your fertility. When planning your treatment, your doctor will aim to preserve your fertility as much as possible if this is important to you. Your specialist doctor or nurse should talk to you about this before treatment starts. 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. But 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 will 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. However, this can take several months. If they wish, most women who have chemotherapy after having only one ovary removed can go on to have children naturally.

If your fertility may be affected, you can ask to be referred to a fertility expert before starting treatment. The fertility expert will discuss ways of increasing the chance of getting pregnant in the future (fertility preservation).

Menopause

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


Your feelings about fertility

It can be hard to cope with the risk of losing your fertility or becoming menopausal because of treatment. It may seem especially difficult when you are 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. Your GP or cancer specialist can arrange for you to talk to a counsellor, which can also be helpful. 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 too. Some organisations can help with this, and provide specialist advice and counselling:

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.
  • 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.
  • Infertility Network UK – provides information, support, telephone counselling and helpful contacts for people with fertility difficulties.


Your feelings

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 is 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 is 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.

Ovacome is 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.

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

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 or cancer information nurses free on 0808 808 00 00, Monday to Friday, 9am to 8pm.