Rhabdomyosarcoma | Sarcoma UK

Get support

Rhabdomyosarcoma

Rhabdomyosarcoma develops in the skeletal or voluntary muscles of the body – the muscles we can control ourselves.

It is most commonly found in the head and neck but it also occurs in the abdomen. This is a rare type of sarcoma that affects more children than adults.

Signs and symptoms

Symptoms of rhabdomyosarcoma sarcoma will depend on the part of the body that’s affected by it. These could include:

  • A tumour in the head or neck may can sometimes cause a blockage (obstruction) and discharge from the nose or throat. Occasionally, an eye may appear swollen and protruding.
  • A tumour in the abdomen (tummy) can cause pain or discomfort in the abdomen and difficulty going to the toilet (constipation)
  • A tumour in the bladder may cause symptoms such as blood in the urine and difficulty passing urine.

Diagnosis

A specialist doctor will diagnose sarcoma through a series of tests. These may include:

  • Physical examination – looking at and feeling any lump
  • A scan – taking pictures of the inside of the body using ultrasound, x-ray, CT, EUS, PET or MRI
  • A biopsy – taking and testing a tissue sample

To read more about scans and tests, click here.

Treatment

Chemotherapy

This treatment uses anti-cancer drugs to destroy cancer cells. It is used to shrink a tumour before surgery so it can removed safely. It is also used after surgery to reduce the risk of the cancer coming back. Sometimes the tumour completely disappears when treated by chemotherapy.

Surgery

If possible, the first treatment option will be surgery. The surgeon will remove the tumour and aim to take to take an area of normal tissue around it too – this is known as taking a margin. If the tumour is too large to be treated surgically, chemotherapy is used to try and shrink the tumour so it is safe to be operated on.

Radiotherapy

This treatment uses high-energy radiation beams to destroy cancer cells. Radiotherapy is used after surgery. The aim is to kill off any local cancer cells in the area of the tumour. It is also used after chemotherapy, where the tumour has completely disappeared following treatment.

Proton beam therapy

This can be effective in treating rhadomyosarcoma in children. It is a different type of radiotherapy that uses high-energy protons rather than high-energy radiation to deliver a dose of radiotherapy. Proton beam therapy can be more effective than regular radiotherapy as it can be delivered precisely to where it is needed. This reduces the risk of damage to the surrounding tissue or vital organs. It is not currently available in the UK; however, the NHS will pay for selected patients (including some sarcoma patients) to receive this type of treatment overseas (in the USA or Europe).

Proton beam therapy will be offered to selected sarcoma patients.

After treatment

After treatment, you will have regular follow-up appointments for several years. You should receive a follow-up schedule from your sarcoma clinical nurse specialist. The usual practice will include:

  • A chance to discuss symptoms
  • An examination to look for any signs of the sarcoma returning. This may include an MRI or ultrasound if required after examination
  • A chest x-ray to rule out any secondary cancers occurring in the lungs

Living with

Sarcoma cancer can reappear in the same area after the treatment of a previous tumour; this is called a local recurrence.

If the cancer does reappear, it is important to get treated as quickly as possible. This could involve further surgery and/or radiotherapy; your treatment will be assessed on an individual basis. It is useful to check for recurrences yourself through self-examination: your doctor or sarcoma clinical nurse specialist can tell you what to look for.

If you are worried about your cancer returning contact your doctor or nurse; they may decide to bring forward the date of your follow up appointment to investigate your concerns.

What if my cancer spreads to another part of my body?

A recurrence of sarcoma may be accompanied by cancer in other parts of the body. This is called metastasis or secondary cancer. Some people are diagnosed with sarcoma because their metastases have been discovered before their primary sarcoma tumour. In sarcoma patients, these secondary cancers may appear in the lungs, which is why a chest x-ray is taken at follow-up appointments.

Secondary cancers may also appear in the liver or brain. Treatment for secondary cancer may involve surgery, radiotherapy or chemotherapy as appropriate; your treatment will be assessed on an individual basis.

If you have any questions or if you need to talk to someone, our Support Line team are here for you.

Search

Popular search terms