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This information is about rhabdomyosarcoma 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 60 children are diagnosed with rhabdomyosarcoma in the UK each year. Most of them are younger than 10 years old. It is more common in boys than girls.
Sarcomas are rare types of cancer that develop in the supporting structures of the body, such as bone, muscle, or cartilage.
There are two main types of sarcoma:
Rhabdomyosarcoma is the most common of the soft tissue sarcomas in children. These tumours develop from muscle or fibrous tissue and can grow in any part of the body.
The most common areas of the body to be affected are around the head and neck, the bladder, or the testes. Sometimes tumours are also found in a muscle or a limb, in the chest, or in the abdominal wall. Occasionally, if the tumour is in the head or neck region, it can spread into the brain or the fluid around the spinal cord.
The causes of rhabdomyosarcoma are unknown. Research is going on all the time into possible causes of this disease. Children with certain rare genetic disorders, such as Li Fraumeni syndrome, have a higher risk of developing rhabdomyosarcoma.
The signs and symptoms will depend on the part of the body that is affected by the rhabdomyosarcoma. The most common sign is a swelling or lump.
A variety of tests and investigations may be needed to diagnose a rhabdomyosarcoma. A small operation to remove a sample from the tumour to be looked at under a microscope (biopsy), may be needed. This is usually done under a general anaesthetic.
Various tests may be done to check the exact size of the tumour, and whether it has spread to any other part of the body. These may include:
Any tests and investigations that your child needs will be explained to you. Our general information on children’s cancers gives details of what the tests and scans involve.
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.
Most patients are grouped depending on whether the cancer is found in only one part of the body (localised disease), or if it has spread from one part of the body to another (metastatic disease). The place in the body where the rhabdomyosarcoma started is also taken into account in the staging system.
Your child's doctor will explain about the stage of your child's cancer.
Treatment depends upon the size of the tumour, its position within the body, and whether it has spread. Treatment of rhabdomyosarcoma usually includes surgery, radiotherapy or chemotherapy, or a combination of these.
If at all possible, surgery will be used to remove the tumour. Chemotherapy, using a combination of drugs, is often given before surgery to shrink the tumour. Radiotherapy may also be given to the area of the tumour, particularly if it cannot be completely removed by surgery.
If the tumour cannot be removed with surgery, treatment will usually involve a combination of chemotherapy and radiotherapy. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells and is usually given every three weeks.
Radiotherapy treats cancer by using high-energy rays that destroy the cancer cells, while doing as little harm as possible to normal cells. It is given to the area where the rhabdomyosarcoma occurs.
Treatment for rhabdomyosarcoma often causes side effects, and your child’s doctor will discuss this with you before treatment starts. Any possible side effects will depend upon the particular treatment being used, and the part of the body that is being treated. Side effects can include: feeling sick (nausea) and vomiting, hair loss, an increased risk of infection or bruising and bleeding, tiredness and diarrhoea.
A small number of children may develop side effects many years after their treatment for a rhabdomyosarcoma. Longer-term side effects depend on the type of treatment used, and may include possible reduction in bone growth, infertility, a change in the way the heart and the kidneys work, hearing problems, and a slight increase in the risk of developing another cancer in later life. There is more detailed information about these late side effects in the general information on children’s cancers.
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 will be 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.
About 2 out of 3 of all children with rhabdomyosarcoma are cured. After treatment, the doctors will regularly check the child to be sure the cancer has not come back and that there are no complications. After a while you will not need to visit the clinic so often.
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 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 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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