Germ cell ovarian tumours

Germ cell ovarian tumours begin in the ovarian cells that develop into eggs (germ cells). They are rare and usually affect girls and young women up to their early 30s. Non cancerous (benign) teratomas are the most common type.

You have surgery to remove the tumour. You might have chemotherapy if your tumour is cancerous. Treatment usually works well and most women are cured.

Types of germ cell tumours

There are different types of tumour which develop in ovarian germ cells. These tumours can be non cancerous (benign) or cancerous (malignant).

Benign germ cell ovarian tumours

Mature teratomas are the most common type of ovarian germ cell tumour. They are non cancerous (benign). Mature teratoma is also often called a dermoid cyst.

They are most common in women during their reproductive years (from teens to forties).

Malignant germ cell ovarian tumours

These tumours contain cancer cells. There are different types including:

• immature teratomas
• dysgerminomas
• yolk sac tumours
• choriocarcinomas
• embryonal carcinomas

Symptoms

Symptoms might include:

• pain in your tummy (abdomen) or lower part of your abdomen that doesn't go away
• bloating or an increase in the size of your abdomen
• irregular periods

Diagnosing

Doctors use various tests to diagnose ovarian germ cell tumours. These might include:

• an ultrasound
• blood tests – germ cell tumours often produce chemicals or hormones (tumour markers) that doctors can measure in the blood
• CT scan
• Chest x-ray
• PET scan

Grading and staging

The grade and stage of your cancer is very important. They help your specialist to decide what treatment you need. 

Grade

The grade describes how the cells look under a microscope.

The less developed the cells look, the higher the grade. Higher grade cancers grow more quickly than low grade.

There are 3 different grades – grade 1, grade 2 and grade 3. Generally, grade 1 cancers are the slowest growing and least likely to spread.

Your doctor might also describe your cancer as low grade (grade 1 cancers) or high grade (grade 2 and 3 cancers).

Stage

The stage of a cancer tells you how far it has grown. For ovarian germ cell cancers, doctors use the same staging system that they use for other types of ovarian cancer. There are 4 stages, from 1 to 4:

• stage 1 means the cancer is only in the ovary (or both ovaries)
• stage 2 means the cancer has spread into the fallopian tube, womb, or elsewhere in the area circled by your hip bones (your pelvis)
• stage 3 means the cancer has spread to the lymph nodes or to the tissues lining the abdomen (called the peritoneum)
• stage 4 means the cancer has spread to another body organ some distance away, for example the lungs or liver 

Treatment

Treatment depends on your type of germ cell tumour. It also depends how far it has grown (the stage). And what the cells look like under the microscope (the grade).

The main treatment is surgery. You might need chemotherapy if your tumour is cancerous.

Non cancerous (benign) germ cell ovarian tumours

Your specialist surgeon (gynaecologist) removes the ovarian cyst. Or rarely the whole of the affected ovary. They leave the other ovary. As most women with ovarian teratoma are young, doctors are aware that they may want to have children in the future. So they remove as little tissue as possible.

Surgery usually cures benign tumours and you don’t need any further treatment.

Cancerous (malignant) germ cell ovarian tumours

You have surgery to remove the cancer. This might be the only treatment you need and the doctors keep a close eye on you to check for signs of the cancer coming back. This is called active surveillance.

Some women need chemotherapy after surgery. This depends on the type, stage and grade of their cancer. You might need further surgery after chemotherapy if scans still show signs of cancer.

Some women may have radiotherapy to their whole abdomen (stomach) area. This is if the cancer has spread or come back. 

The treatments

Coping

Coping with a diagnosis of cancer can be difficult, both practically and emotionally. It can be especially difficult if you have a rare cancer. Being well informed about your cancer and its treatment can make it easier to make decisions. And cope with what happens.

Talking to other people who have the same thing can help. But it can be hard to find people who have had a rare type of cancer.

Cancer Research UK’s discussion forum is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.

Or contact the Rare Cancer Alliance who offer support and information to people who have rare cancers.

Research and clinical trials

There may be fewer clinical trials for rare types of cancer than for more common types.

It is hard to organise and run trials for rare cancers. Getting enough patients is critical to the success of a trial. The results won't be strong enough to prove that one type of treatment is better than another if the trial is too small.

The International Rare Cancers Initiative (IRCI) aims to develop more research into new treatments for rare cancers. They are designing trials that involve several countries so that more people will be available to enter trials.

There are some clinical trials for people with germ cell tumours. You can read more about these on our clinical trials database by searching for germ cell tumours.

Follow up

After you've finished your treatment, your specialist will see you regularly. They will examine you and ask you how you are feeling. How often they see you will depend on what tumour you had and your treatment.

If you don’t have chemotherapy

Your doctor will monitor you very closely if you have a cancerous tumour and you don’t have chemotherapy. This is called active surveillance and aims to detect any sign of the cancer coming back. Tests include:

• a physical examination
• blood tests
• ultrasound scan
• chest x-ray
• CT scan

Your doctor monitors you for 10 years after diagnosis. You have tests and see the doctor frequently over the first year. The monitoring gradually becomes less frequent as time passes.

It’s very important that you keep up with all of these appointments. Your doctor will tell you more.

If you had chemotherapy

You usually have blood tests to check for any changes in the level of the tumour markers. You might have an ultrasound or CT scan from time to time, but not everyone needs these.

You have tests and see the doctor every few months for the first 2 years. The monitoring gradually becomes less frequent as time passes.

Getting pregnant after treatment

Your doctor might advise you to avoid getting pregnant during the first 2 years after diagnosis. This is because if the cancer is going to come back, it usually does so in the first 2 years. Talk to your doctor about this as the advice will depend on your individual situation.