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Macmillan and Cancerbackup merged in 2008. Together we provide free, high quality information for people affected by cancer through our publications, website and phone service. Find out more|.
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This information is about germ cell tumours in children. You may find it helpful to read it alongside the Macmillan/CCLG booklet A parent’s guide to children’s cancer|, which contains more information about children's cancer, diagnosis, treatment and support services.
Each year fewer than 45 children develop malignant germ cell tumours in the UK. Germ cell tumours can appear at any age. They develop from cells that produce eggs or sperm. As a result, most germ cell tumours affect the ovaries or testes. However, it's possible for this type of tumour to develop in other parts of the body.
As a baby develops during pregnancy, the cells producing egg or sperm normally move to the ovaries |or testes|. However, occasionally they can settle in other parts of the body, where they can develop into tumours. The most common places for these tumours to occur are the area at the bottom of the spine (sacrococcygeal), the brain, chest and abdomen.
The tumours are sometimes given different names, depending on their characteristics, such as yolk-sac tumours, germinomas, embryonal carcinomas, teratomas and immature teratomas. They may be non-cancerous (benign) or cancerous (malignant).
Malignant tumours have the ability to grow and spread to other parts of the body. Benign tumours do not spread, but may cause problems by pressing on nearby tissue and body structures. The behaviour of immature teratomas falls between benign and malignant; for example, they may spread within the abdomen but not beyond, and can be removed surgically.
The cause of germ cell tumours is unknown. Germ cell tumours, like other types of cancer, are not infectious and can't be passed on to other people.
The symptoms depend on where the tumour develops, but usually a lump appears that can either be felt or leads to other problems.
A variety of tests| and investigations may be needed to diagnose a germ cell tumour. It's likely that a sample of cells from the tumour will be taken (biopsy), as this will help to identify whether or not it's malignant. A CT or MRI scan may be used to see the exact position of a tumour within the body. Chest x-rays may be taken to see if there's a tumour in the lungs.
Germ cell tumours often produce proteins that can be measured in the blood. These proteins are sometimes called tumour markers. They are alpha-fetoprotein (AFP) and human chorionic gonadotrophin (HCG). The levels of these proteins will be checked when the tumour is diagnosed, and will be monitored during and after treatment.
Sometimes the presence of markers is enough to diagnose a germ cell tumour, and a biopsy is not needed. This is particularly so if surgery is not needed for treatment - for example if the tumour occurs in the brain.
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the particular type and stage of the cancer helps doctors to decide on the most appropriate treatment. Generally cancer is divided into four stages:
The cancer is small, has not spread and has been completely removed.
The cancer is larger and may not have been completely removed, or may have spread to nearby organs.
The cancer has spread to other parts of the body.
Cancer that has spread to distant parts of the body and formed new tumours is known as secondary or metastatic cancer.
Treatment will depend on a number of factors, including the size, position, and stage of the tumour. It usually includes either surgery| or chemotherapy|, or a combination of the two.
If the tumour can be removed by surgery, this completely cures benign tumours. It may be necessary to remove the testis or ovary if this is where the tumour first developed.
If the tumour is malignant and can be completely removed by surgery, chemotherapy will not always be needed unless it regrows, particularly if the tumour arose in the testis or ovary. If the tumour can't be removed easily, or has spread, chemotherapy will be given.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Germ cell tumours are very sensitive to chemotherapy. It's usually given as injections and drips (infusions) into a vein. A combination of drugs| is usually given every three weeks for three or five months, depending on the position of the tumour, the level of AFP, and whether or not the tumour has spread.
Treatment of malignant germ cell tumours in the brain is a little different. Although they are very sensitive to chemotherapy, they also need radiotherapy. Radiotherapy| is the use of high-energy rays to destroy cancer cells. Unlike germ cell tumours elsewhere in the body, it's not always necessary to remove germ cell tumours in the brain with surgery.
Treatment often causes side effects, and your child’s doctor will discuss these with you before treatment starts. The surgery will be individually planned to try to reduce any possible problems. The side effects of chemotherapy will depend upon the drugs used but can include:
More than four out of five children who develop germ cell tumours will be cured.
A small number of children may develop side effects, sometimes many years later. These may include problems with kidney function, lung function and hearing loss. Your child’s doctor or nurse will tell you more about any possible late side effects|.
If only one ovary or testis is removed, your child is likely to be able to have children.
There is more detailed information about these long-term side effects in the booklet A parent’s guide to children’s cancer.
Many children have their treatment as part of a clinical research trial|. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version.
Specialist doctors carry out trials for children's cancers. If appropriate, your child's medical team will talk to you about taking part in a clinical trial and will answer any questions you have. Written information is often provided to help explain things.
Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide if it's right for your child.
Your child will continue to have regular blood tests during and after treatment, to check their levels of AFP and HCG. If the levels rise, this indicates that the tumour may have come back| and further treatment is needed.
If you have specific concerns about your child’s condition and treatment, it's best to discuss them with your child’s doctor, who knows the situation in detail.
As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. You may have many emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions| and are part of the process that many parents go through at such a difficult time.
It's not possible to address in this fact sheet all of the feelings you may have. However, the Macmillan/CCLG booklet A parent’s guide to children’s cancers talks about the emotional impact of caring for a child with cancer and suggests sources of help and support.
Your child may have a variety of powerful emotions| throughout their experience of cancer. The parent's guide discusses this further and talks about how you can support your child|.
Our booklet Peppermint Ward| is a storybook for younger children with cancer. It looks at the issues that they and their family may face, and helps them to explore their feelings.
CLIC Sargent| offers practical support to children and young people with cancer or leukaemia, and to their families.
CCLG| coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland (there's a map of the centres| on the website). Has information about the CCLG, childhood cancer and leukaemia.
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.