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:

• Head and neck area.
• Urinary system, such as the bladder.
• Reproductive system, such as the vagina, uterus and testes.
• Arms and legs.

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:

• Headache.
• Bleeding in the nose, throat or ears.
• Tearing, bulging or swelling of the eyes.

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

• A mass or bleeding in the vagina or rectum.
• Trouble urinating and blood in the urine.
• Trouble with bowel movements.

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

• Possibly pain in the affected area, if the cancer pushes on nerves or other areas of the body.
• Swelling or a lump in the arm or leg.

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:

• Younger age. Rhabdomyosarcoma most often happens to children younger than 10.
• Inherited syndromes. Rarely, rhabdomyosarcoma has been linked to genetic syndromes that are passed from parents to children. These include neurofibromatosis 1, Noonan syndrome, Li-Fraumeni syndrome, Beckwith-Wiedemann syndrome and Costello syndrome.

There is no way to prevent rhabdomyosarcoma.

Complications of rhabdomyosarcoma and its treatment include:

• Cancer that spreads. Rhabdomyosarcoma can spread from where it started to other parts of the body. When cancer spreads, it might require more-intense treatments. This can make recovery harder. Rhabdomyosarcoma most often spreads to the lungs, lymph nodes and bones.
• Long-term side effects. Rhabdomyosarcoma and its treatments can cause many side effects, both short and long term. Your healthcare team can help you manage the side effects that happen during treatment. And the team can give you a list of side effects to watch for in the years after treatment.

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:

• X-rays.
• CT scans.
• MRI scans.
• Positron emission tomography scans, also called PET scans.
• Bone scans.

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:

• Needle biopsy. This method uses a needle to remove tissue samples from the cancer.
• Surgical biopsy. Sometimes, surgery might be needed to remove a larger sample of tissue.

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:

• Learn enough about rhabdomyosarcoma to make decisions about care. Ask your healthcare professional about this type of sarcoma, including treatment options. Learning more can help you feel more in control. If your child has cancer, ask the healthcare team how talk to your child about the cancer.
• Keep friends and family close. Keeping people close can help you deal with cancer. Friends and relatives can help with everyday tasks, such as shopping, cooking and taking care of your home.
• Ask about mental health support. Talking to a counselor, medical social worker, psychologist or other mental health professional also may help you. If your child has cancer, ask your healthcare team to help you find mental health support. You also can check online for a cancer organization, such as the American Cancer Society, that lists support services.

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:

• Orthopedic surgeons who specialize in operating on cancers that affect the bones or muscles, also called orthopedic oncologists.
• Other surgeons, depending on where the cancer is and the age of the person who needs treatment. Examples are pediatric surgeons, head and neck surgeons, gynecologists or urologists.
• Specialists who treat cancer with chemotherapy or other medicines. These might be medical oncologists or, for children, pediatric oncologists.
• Specialists who treat cancer with radiation, called radiation oncologists.
• Specialists who study tissue to find the type of cancer, called pathologists.
• Rehabilitation specialists who can help in recovery after surgery.

What you can do

Before the appointment, make a list of:

• Symptoms, such as pain, feeling tired or losing weight.
• Any medicines, vitamins and supplements being taken, including the dose and how often you take them.
• Key personal information, including other medical conditions or surgeries, any major stresses or recent life changes.

Also:

• Bring previous scans or X-rays, the images and reports, and any other medical records that might be helpful.
• Consider taking a relative or friend along to help you remember all the information you get during the appointment.
• Make a list of questions to ask the healthcare professional to make the most of your time.

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

• What type of cancer is this?
• Has the cancer spread?
• Are more tests needed?
• What are the treatment options?
• What are the chances that treatment will cure this cancer?
• What are the side effects and risks of each treatment?
• Will treatment affect being able to have children? If so, do you offer ways to preserve that ability?
• Are there brochures or other printed material that I can have? What websites do you suggest?

What to expect from your doctor

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

• What symptoms worry you?
• When did you notice these symptoms?
• Are the symptoms constant or do they come and go?
• How severe are the symptoms?
• What, if anything, seems to make the symptoms better?
• What, if anything, seems to make the symptoms worse?