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This information is about germ cell tumours in children. It is helpful to read it alongside our general information on children's cancer, which contains more information about cancers in children, their diagnosis and treatment, and the support services available.
Fewer than 45 children develop malignant germ cell tumours in the UK each year. Germ cell tumours can appear at any age. Germ cell tumours develop from cells that produce eggs or sperm. As a result, most germ cell tumours affect the ovaries or testes. However, it is possible for this type of tumour to develop in other parts of the body. During pregnancy, as a baby develops, 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 this area, and can be removed surgically.
The cause of germ cell tumours is unknown.
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 is likely that a sample of cells from the tumour (biopsy) will be taken, as this will help to identify whether or not it is malignant. A CT or MRI scan may be used to see the exact position of any tumour within the body. Chest x-rays may be taken to see if there is a tumour in the lungs.
Germ cell tumours often produce proteins that can be measured in the blood. These proteins are sometimes known as 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.
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 the stage, of the cancer helps the doctors to decide on the most appropriate treatment. Generally cancer is divided into four stages:
Stage 1 The cancer is small and has not spread.
Stages 2 and 3 The cancer is larger and has spread to nearby organs.
Stage 4 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, and 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, no chemotherapy will be needed unless the tumour regrows. If the tumour cannot be removed easily, or has spread, chemotherapy will be given. Germ cell tumours are very sensitive to chemotherapy. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is 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 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 hearing loss, kidney function, and lung function. Your child’s doctor or nurse will explain 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.
More detailed information about these possible late side effects can be found in our general information on 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 of the standard treatment). Specialist doctors carry out trials for children's cancer. Your child's medical team will talk to you about taking part in a clinical trial (if appropriate) and will answer any questions you may 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 is right for your child.
During, and following, treatment your child will continue to have regular blood tests 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 is best to discuss them with your child’s doctor, who knows their 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 different 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.
Your child may have a range of powerful emotions throughout their experience of cancer. 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.
This section has been compiled using information from a number of reliable sources, including:
For further references, please see the general bibliography.
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