Rhabdomyosarcoma – Information, Treatment & Support

A rhabdomyosarcoma is a tumour that comes from the skeletal muscle cells. It is a rare type of cancer.

There are two main types of muscles in the body

  • Skeletal (or voluntary) muscles which we control to make an action (e.g. to move arms or legs).
  • Smooth (or involuntary) muscles over which we have no control (e.g. in the stomach or heart).

Because skeletal muscles are found in all parts of the body, rhabdomyosarcomas can occur in all parts of the body. They are most commonly found in the head, neck, bladder, arms, legs and torso.

There are 3 main types of rhabdomyosarcoma:

  • Embryonal rhabdomyosarcoma is more often found in younger children. It occurs around the head and neck, and sometimes the eye, called an orbital rhabdomyosarcoma. Embryonal rhabdomyosarcomas often spread to other parts of the body, however they respond well to treatment and are often curable.
  • Alveolar rhabdomyosarcoma is more common in older children and adolescents. They occur more often in the limbs or in the chest or abdomen.
  • Pleomorphic rhabdomyosarcoma tends to occur in middle-aged people. The treatment is usually a combination of chemotherapy, surgery and radiotherapy.

Men are more often diagnosed with rhabdomyosarcoma than women.

  • Some rare inherited genetic conditions put people at greater risk of developing a rhabdomyosarcoma. These conditions include Li-Fraumeni syndrome, which is a genetic disorder.
  • Soft tissues sarcoma development may also be linked to chemical exposure and previous radiation treatment for cancer.

Sarcomas in the limbs may cause:

  • swelling
  • tenderness
  • a lump may be visible

Sarcomas in the lungs may cause breathlessness. Sarcomas in the abdomen may cause nausea and vomiting.

  • There may also be bleeding from the nose, vagina, rectum, or throat (if the tumour is in these areas), or a dropping eyelid if the tumour is in the eye region.

TIP: If you have any of these symptoms you should have them checked by your doctor – but remember, they are common to many illnesses other than a rhabdomyosarcoma.

After visiting a GP a referral will probably be made to a hospital for some tests. These may include:

If the results of the test show a rhabdomyosarcoma, another referral will be made to a doctor who specialises in the treatment of sarcomas.

A team of doctors and other staff at the hospital will plan treatment. It will depend on the size of the tumour and where it is. Treatment may be coordinated by a surgeon (a doctor who performs operations) an oncologist (a doctor who specialises in treating cancer with chemotherapy) a and a radiologist (a doctor who specialises in treating cancer with radiation).

Treatment may involve:

Often in young people and children chemotherapy is given first to try and shrink the tumour, before surgery. If all of the tumour is destroyed by chemo, then there may be follow-up radiotherapy.

Surgery for rhabdomyosarcoma:

  • The aim of surgery is to remove the tumour. Sometimes, because of the type of tumour it can often be difficult to remove. The surgeon will usually remove the tumour and some of the area around the tumour so that the areas around it are cancer-free.

It depends on where the rhabdomyosarcoma is as to the details of the operation. If the sarcoma is on the legs or arms, sometimes some of the bone will have to be removed. Either a prosthesis (a metal replacement bone), or a bone graft (bone taken from another part of the body) will be inserted to replace what is missing. This is known as limb-sparing surgery.

Unfortunately because of the location of the tumour, sometimes limb-sparing surgery doesn’t work and a limb might have to be amputated. It only ever happens if it is completely unavoidable. This is because the cancer has spread into the nearby blood vessels. For more information about surgery, go to our surgery page.

Radiotherapy for rhabdomyosarcoma:

  • Radiotherapy is often given to people with larger rhabdomyosarcomas. It can be given after surgery to ensure that any remaining cancer cells are destroyed.

Sometimes it is given before surgery, to try and shrink the tumour and make the surgery easier. Whether you have radiotherapy before or after surgery depends on your individual case. For more information about radiotherapy, go to our radiotherapy page.

Chemotherapy for rhabdomyosarcoma:

Chemotherapy (the use of drugs called cytotoxics to kill or slow the growth of cancer cells) is often given to people with rhabdomyosarcoma to shrink the tumour prior to surgery. This is called neo-adjuvant treatment (chemo before surgery) and usually means that the surgery will be less invasive because the tumour is smaller. Alternatively, chemo might be given after surgery to kill any remaining cancer cells and stop them from spreading. This is called adjuvant chemotherapy (chemo after surgery). For more information about chemotherapy, go to our chemotherapy page.

Side effects of treatment:

There are some side effects of the treatments for rhabdomyosarcoma which can be found in our side effects page.

Join Canteen’s online community to chat with other young people about rhabdomyosarcomas, their treatment… or anything really.