Rhabdomyosarcoma

Rhabdomyosarcoma (RMS) is a rare type of soft tissue sarcoma. Rhabdomyosarcoma grows in the muscles of the body we control ourselves. These are called voluntary muscles.

The most common parts of the body for rhabdomyosarcoma to develop are the:

• head and neck
• bladder
• vagina
• arms and legs
• central part of the body (trunk).

Rhabdomyosarcoma is more common in children and teenagers than in adults. The Children's Cancer and Leukaemia Group has more information about rhabdomyosarcoma in children.

Rhabdomyosarcoma can start in any part of the body. The symptoms depend on the part of the body that is affected.

Rhabdomyosarcoma in the head or neck may cause:

• a lump that you can see or feel, which may or may not be painful
• a blockage and discharge from the nose
• changes in swallowing or hearing
• the eye to appear swollen or pushed forward.

In the tummy (abdomen), symptoms include:

• pain in the tummy (abdomen)
• difficulty pooing (constipation).

If rhabdomyosarcoma develops in the bladder, vagina or testicles, it might cause:

• blood in your pee (urine)
• difficulty peeing
• needing to pee more frequently
• vaginal discharge
• swelling in a testicle.

These symptoms can be caused by conditions other than cancer. But if you notice any of these symptoms, get them checked by your GP.

You usually start by seeing your GP, who will examine you. You may also have blood tests to check your general health and the number of cells in your blood (blood count).

If your GP thinks your symptoms could be caused by cancer they will refer you to a specialist doctor at the hospital.

At the hospital, the specialist doctor will ask you about your symptoms and your general health. They will also examine you and arrange some of the following tests:

If rhabdomyosarcoma is diagnosed you might have further tests to find out if it has spread. These may include:

Our cancer support specialists or your specialist doctor or nurse can give you information about any tests we do not explain here.

The laboratory will also test cancer cells from the biopsy or surgery to look for genetic changes. These changes are called mutations. The results can tell doctors which treatment is likely to be helpful.

Waiting for test results can be a difficult time, we have more information that can help.

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT). Because sarcomas are rare cancers, you should be referred to a specialist unit for treatment. This may mean you need to travel further to have your treatment.

Your treatment will depend on different things, including your general health and risk group. Your cancer doctor and specialist nurse will explain the different treatments and their side effects. They will also talk to you about the things you should consider when making treatment decisions.

You may have some of the following treatments.

Treatment often begins with chemotherapy. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy the cancer cells. It can be given:

• before surgery, to shrink the tumour (neo-adjuvant chemotherapy)
• after surgery, to reduce the risk of the cancer coming back (adjuvant chemotherapy).

You usually have a combination of chemotherapy drugs. The drugs used and length of your treatment depend on the type and risk group of the rhabdomyosarcoma.

Chemotherapy is also sometimes given along with radiotherapy. This is called chemoradiation.

Surgery is used if the tumour can be removed without causing too much damage to nearby tissue or affecting your appearance.

The type of surgery depends on where in the body the rhabdomyosarcoma is. Your surgeon will talk to you about the operation and explain how it may affect you. The aim is to remove all of the tumour, along with an area of healthy tissue (margin). Sometimes the surgeon removes lymph nodes close to the sarcoma.

If there are cancer cells in the margin, you might need another operation to remove more tissue. Making sure the margins are clear reduces the risk of the cancer coming back.

Radiotherapy uses high-energy rays to destroy cancer cells. It can be given:

• before an operation, to shrink the tumour and make it easier to remove
• if the tumour cannot be completely removed with surgery – this could be because of its size or position in the body
• if there is a possibility of cancer cells being left behind after surgery.

Sometimes chemotherapy is given at the same time as radiotherapy (chemoradiation).

Proton beam therapy

Proton beam therapy is a type of radiotherapy that is sometimes used to treat rhabdomyosarcoma. It uses proton radiation rather than x-rays. Proton beams can be made to stop before they exit the area being treated. This is different to standard radiotherapy beams.

You may be offered some treatments as part of a clinical trial.

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.