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This information is about a rare type of ovarian cancer. It should ideally be read with our general information about ovarian cancer|.
The ovaries are two small oval-shaped organs, which are part of the female reproductive system. Each month, in women of childbearing age, an egg leaves one of the ovaries and is released into the pelvic cavity, where it then passes down the fallopian tube to the womb (uterus). If the egg is not fertilised, it breaks down and is shed, along with the lining of the womb, as part of the monthly period.
The ovaries also produce the female sex hormones oestrogen and progesterone. As a woman nears the menopause (change of life), her ovaries make less of these hormones and her periods gradually stop.
The ovaries and their surrounding structures
View a large copy of the ovaries and their surrounding structures image|
Germ cell tumours of the ovary are a rare type of ovarian cancer. Fewer than 1,500 women are diagnosed with this type of cancer in the UK each year. Germ cell tumours differ widely from each other in the way they behave and how they are treated. This fact sheet is a general guide, but it is important to speak to your specialist team about your individual situation.
Germ cell tumours start in the egg-producing (ovum-producing) cells of the ovary. They are different from the more common type of cancer of the ovary (epithelial cancer), and the treatment for them also differs. Some tumours produced by germ cells are benign (non-cancerous) and others are malignant (cancerous). Germ cell tumours tend to affect only one ovary, and most are curable, even if they are diagnosed at an advanced stage.
These are benign tumours that are also known as mature teratoma. They are the most common type of germ cell tumour. They are more commonly seen in young women, but may also affect children and elderly women.
This type of germ cell tumour is malignant and can more frequently affects both of the ovaries. It is more common in women in their twenties.
These tumours are also malignant and usually affect only one ovary. They are usually diagnosed in girls or young women. There are different types of non-dysgerminomatous germ cell tumours, some of which are very rare.
The different types are:
The cause of germ cell tumours is unknown. Germ cells are a normal part of the ovary, but sometimes changes in these cells make them divide and grow too quickly, resulting in the formation of a tumour.
The most common symptoms include abdominal pain, a feeling of fullness or abdominal swelling, and sometimes an increasing need to pass urine. Some women may have irregular vaginal bleeding. These symptoms can be caused by many other things, but it is important to tell your doctor if you have any of them.
Your GP will examine you and arrange for any further tests that may be necessary. You will need to be referred to a hospital specialist for these tests and for expert advice and treatment.
At the hospital, your doctor will carry out an internal pelvic examination to check the shape and position of the pelvic organs.
Several tests may be used to diagnose germ cell tumours of the ovary. One or more of the following tests may be carried out:
You may have a test to see whether or not chemicals called tumour markers are being released into the bloodstream. These are useful in the diagnosis and treatment of certain types of germ cell tumour. The two main markers produced by germ cell tumours are AFP (alpha-fetaprotein) and HCG (human chorionic gonadotrophin).
A small device like a microphone, which produces sound waves, is rubbed over the abdomen. The sound waves are converted into a picture by a computer to clearly show the ovaries. Ultrasound scans can also be carried out vaginally. A small device (about the size of a tampon) is put into the vagina. Again, the device produces sound waves that are converted into a picture by a computer.
A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and takes 10–30 minutes. CT scans use a small amount of radiation, which is very unlikely to harm you and won't harm anyone you come into contact with.
You will be asked not to eat or drink for at least four hours before the scan.
You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. For a few minutes, this may make you feel hot all over. If you are allergic to iodine or have asthma you could have a more serious reaction to the injection, so it is important to let your doctor know beforehand.
Occasionally, a simple operation called a laparoscopy is done. A small cut is made in the skin of the abdomen to allow the doctor to look at the ovaries and the surrounding area with a laparoscope. A laparoscope is a thin, rigid tube that acts as a mini telescope. It can be inserted through the cut, and into the abdomen, and by looking through the laparoscope the doctor can see the ovaries. The doctor may be able to remove the affected ovary in this way, or more usually by doing an operation called a laparotomy|.
Once the ovary has been removed, it is sent for examination under a microscope. The doctor can then tell if it is a germ cell tumour, and if so, what type it is.
The stage of a cancer is a term used to describe its size and whether or not it has spread beyond its original site. Knowing the particular type and the stage of the cancer helps the doctors decide on the most appropriate treatment for you.
The most commonly used staging system is called the TNM system, where:
T refers to the tumour size.
N refers to whether or not lymph nodes are affected.
M refers to whether or not the cancer has spread to other parts of the body (metastases).
The T, N and M will often have numbers attached to describe the detail. For example, a T1 tumour may be very small and just in one layer of tissue, whereas a T4 tumour may be a larger size and spread through several layers of tissue.
The exact details of the T, N and M will depend on the cancer type.
In addition to TNM staging, you’ll probably hear the doctors use a number staging system. There are usually three or four number stages for each cancer type.
Stage 1 describes a cancer at an early stage when it's usually small in size and hasn’t spread, whereas stage 4 describes cancer at a more advanced stage when it has usually spread to other parts of the body. Stages 2 and 3 are in-between these stages.
The number stages are made up of different combinations of the TNM stages. So a stage 1 cancer may be described as either T1, N0, M0 or T2, N0, M0.
Number stages may also be further subdivided to give more detailed information about tumour size and spread. For example, a stage 3 cancer may be subdivided into stage 3a, stage 3b and stage 3c. A stage 3b cancer may differ from a stage 3a cancer in either the tumour size or if the cancer has spread to lymph nodes.
In the last few years, staging systems have become increasingly complex and they now describe the size and spread of different types of cancer in much greater detail. This can be very helpful in planning the details of treatment or predicting outcomes.
However, doctors will often use a much simpler approach when talking about staging. They might use words like ‘early’ or ‘local’ if the cancer hasn't spread, ‘locally advanced’ if it has begun to spread into surrounding tissues or nearby lymph nodes, or ‘advanced’ or ‘widespread’ if it has spread to other parts of the body. Your doctors can give you more information about the stage of your particular cancer.
Improvements have been made in treating germ cell tumours, and most women can now be completely cured. The treatment you will have depends on the site and type of germ cell tumour. Treatment will usually involve a combination of surgery and chemotherapy.
The initial treatment for germ cell tumours is removal of the affected ovary and fallopian tube (unilateral salpingo-oophorectomy) during an operation known as a laparotomy|. This is where a cut is made into the abdominal wall to allow the surgeon to remove the ovary.
In most cases it's only necessary to remove the affected ovary and the fallopian tube, which won't affect a woman's ability to have children. Sometimes, however, it may be necessary to remove both ovaries, the fallopian tubes, and the womb (a total abdominal hysterectomy and bilateral salpingo-oophorectomy).
Chemotherapy| is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. They work by disrupting the growth of cancer cells.
The drugs are usually given as injections or drips into a vein in your arm (intravenously). Often a combination of chemotherapy drugs is given. Sometimes it is not necessary to follow the surgery with chemotherapy if the tumour is discovered at a very early stage.
If chemotherapy is necessary, it is usually given every 3–4 weeks, for four or more sessions of treatment.
Radiotherapy treats cancer by using high-energy rays that destroy cancer cells, while doing as little harm as possible to normal cells. Radiotherapy is sometimes given to treat particular types of germ cell tumours of the ovary.
One of the main aims of treatment in young women is to preserve fertility|, and this is taken into consideration when treatment is being decided. If you have had both of your ovaries removed, or you have had radiotherapy to the ovaries, you will be infertile. If only one of your ovaries has been removed, the remaining ovary will continue to produce eggs.
If you have had both your ovaries removed, you will immediately start your menopause. Women who have had radiotherapy to the ovaries will also begin the menopause, although this will take a few months.
If you have chemotherapy treatment, it may affect your remaining ovary and you may notice that your monthly periods stop or become irregular. Once the chemotherapy is finished, your periods should return to normal; however, this may take several months. Some older women may start their menopause due to chemotherapy.
Women who begin the menopause may benefit from taking HRT (hormone replacement therapy), which can help to relieve menopausal symptoms. Your doctor can give you further advice.
Younger women in particular often find it difficult to come to terms with the fact that they can no longer have children if they lose their fertility. They may also feel that they have lost a part of their female identity. It can help to discuss any fears or worries with a sympathetic friend, family member or a specialist nurse. Counselling can be arranged either by the hospital or through your GP.
After your treatment is completed, you will have regular check-ups and possible scans or x-rays. These will probably continue for several years. If you have any problems, or notice any new symptoms in between these times, let your doctor know as soon as possible.
During your diagnosis and treatment of cancer you are likely to experience a number of 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. 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 wish to contact our cancer support specialists| for advice and information on counselling in your local area.
This section has been compiled using information from a number of reliable sources, including:
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.