Rhabdomyosarcoma is a rare type of cancer that starts as a growth of cells in soft tissue. Soft tissues support and connect organs and other parts of the body. Rhabdomyosarcoma most often starts in muscle tissue.

Although rhabdomyosarcoma can start anywhere in the body, it’s more likely to start in the:

Rhabdomyosarcoma treatment often involves surgery, chemotherapy and radiation therapy. Treatment depends on where the cancer starts, how large it grows and whether it spreads to other parts of the body.

Research into diagnosis and treatment have greatly improved the outlook for people diagnosed with rhabdomyosarcoma. More and more people are living for years after a rhabdomyosarcoma diagnosis.

Signs and symptoms of rhabdomyosarcoma depend on where the cancer starts.

For example, if the cancer is in the head or neck area, symptoms may include:

If the cancer is in the urinary or reproductive system, symptoms may include:

If the cancer is in the arms or legs, symptoms may include:

It’s not clear what causes rhabdomyosarcoma. It starts when a soft tissue cell develops changes in its DNA. A cell’s DNA holds the instructions that tell a cell what to do.

In healthy cells, the DNA gives instructions to grow and multiply at a set rate. The instructions tell the cells to die at a set time. In cancer cells, the DNA changes give different instructions. The changes tell the cancer cells to make many more cells quickly. Cancer cells can keep living when healthy cells would die. This causes too many cells.

The cancer cells might form a mass called a tumor. The tumor can grow to invade and destroy healthy body tissue. In time, cancer cells can break away and spread to other parts of the body. When cancer spreads, it’s called metastatic cancer.

Factors that may increase the risk of rhabdomyosarcoma include:

There is no way to prevent rhabdomyosarcoma.

Complications of rhabdomyosarcoma and its treatment include:

Rhabdomyosarcoma diagnosis usually begins with a physical exam. Based on the results, the healthcare team might recommend other tests. These may include imaging tests and a procedure to remove a sample of cells for testing.

Imaging tests

Imaging tests make pictures of the inside of the body. They might help show the location and size of a rhabdomyosarcoma. Tests might include:

Removing a sample of tissue for testing

A biopsy is a procedure to remove a sample of tissue for testing in a lab. A biopsy for rhabdomyosarcoma needs to be done in a way that won’t cause problems with future surgery. For this reason, it’s a good idea to seek care at a medical center that sees many people with this type of cancer. Experienced healthcare teams will select the best type of biopsy.

Types of biopsy procedures used to diagnose rhabdomyosarcoma include:

The biopsy sample goes to a lab for testing. Doctors who study blood and body tissue, called pathologists, will test the cells for cancer. Other special tests give more details about the cancer cells. Your healthcare team uses this information to make a treatment plan.

Rhabdomyosarcoma treatment most often combines chemotherapy, surgery and radiation therapy.

Which treatments your healthcare team suggests depends on where the cancer is and the size of the cancer. Treatment also will depend on how fast the cancer cells are likely to grow and whether the cancer has spread to other parts of the body.

Surgery

The goal of surgery is to remove all the cancer cells. But that’s not always possible if the rhabdomyosarcoma has grown around or near organs. If the surgeon can’t safely remove all the cancer, your healthcare team will use other treatments to kill cancer cells that might be left. This might include chemotherapy and radiation.

Chemotherapy

Chemotherapy treats cancer with strong medicines. Many chemotherapy medicines exist. Treatment often involves a combination of medicines. Most chemotherapy medicines are given through a vein. Some come in pill form.

For rhabdomyosarcoma, chemotherapy is often used after surgery or radiation therapy. It can help kill cancer cells that might be left. Chemotherapy also can be used before other treatments. The chemotherapy can help shrink a cancer to make it easier to do surgery or radiation therapy.

Radiation therapy

Radiation therapy treats cancer with powerful energy beams. The energy can come from X-rays, protons or other sources. During radiation therapy, you lie on a table while a machine moves around you. The machine directs radiation to precise points on your body.

For rhabdomyosarcoma, radiation therapy might be recommended after surgery. It can help kill cancer cells that might be left. Radiation therapy also can be used instead of surgery. Radiation therapy might be preferred if the cancer is in an area where surgery isn’t possible because of nearby organs.

Clinical trials

Clinical trials are studies of new treatments. These studies provide a chance to try the latest treatments. The risk of side effects might not be known. Ask your healthcare professional if you might be able to be in a clinical trial.

A diagnosis of rhabdomyosarcoma can bring up many feelings. With time, you’ll find ways to cope. Until then, it might help to:

Start by making an appointment with your or your child’s primary care professional. If there’s a concern that you may have rhabdomyosarcoma, that professional will refer you to a specialist who has experience treating cancer.

Rhabdomyosarcoma treatment often involves a team of specialists. The team may include:

What you can do

Before the appointment, make a list of:

Also:

Whether the appointment is for you or for your child, your questions might include:

What to expect from your doctor

Your healthcare professional will likely ask you questions. Questions might include:

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