If You or Your Child Has Rhabdomyosarcoma

What is rhabdomyosarcoma (RMS)?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer. RMS is a cancer that starts in very early forms of muscle cells.

Most often RMS happens in children, but teens and adults can get it too.

There are different types of RMS. Your doctor can tell you more about the type you or your child has.

RMS can start almost anywhere in the body. The most common places are:

• The head and neck area (such as near the eye, inside the nose or throat, or near the spine in the neck)
• The bladder, prostate, cervix, uterus, or vagina
• The arms and legs

Sometimes cancer cells from RMS can spread to other parts of the body, such as the lungs or bone marrow. When cancer cells spread like this, it is called metastasis.

Even if RMS spreads to the lungs (or to any other place), it is still called RMS. It is not called lung cancer unless it starts from lung cells.

How does the doctor know I have (or my child has) RMS?

RMS can start in almost any part of the body, so each person might have different symptoms. One of the most common symptoms is a lump or swelling where the tumor is, which might be painful and get bigger over time. Tumors in the head might cause vision problems or headaches. Tumors in the abdomen (belly) might cause bleeding from the vaginal canal or blood in the urine, belly pain, vomiting, or constipation.

If you or your child has symptoms that could be from RMS (or another type of tumor), the doctor will want to get a complete medical history to learn more about the symptoms and will do a physical exam. Tests might be needed as well.

Tests that may be done

X-rays: X-rays are good at showing bones, but they’re not as good for seeing other parts of the body. An x-ray is often the first test done if a doctor thinks a tumor might be in the bones of the arm or leg, but it may not be as helpful for other tumors.

Ultrasound (sonogram): This test uses sound waves and their echoes to make pictures of your insides. It is sometimes used as the first test to look for tumors in the belly.

CT scan: This test uses x-rays to make detailed pictures of the inside of the body. It can often show soft tissue tumors, such as RMS. It can also show if cancer has spread to other parts of the body. This test can be used to plan for a biopsy (see below), surgery or radiation treatment, depending on where the tumor is.

MRI scan: MRIs use radio waves and strong magnets instead of x-rays to make detailed pictures. MRIs make it easier to see the extent of the tumor. This test may be used to plan for a biopsy (see below), surgery or radiation treatment, depending on where the tumor is.

PET scan: PET scans use a special kind of sugar that can be seen inside the body with a special camera. If there is cancer, this sugar shows up on the test. This test can help show if something that is seen on another test is cancer or not.

Bone scan: A bone scan can help show if a cancer has spread to the bones. This test can be useful because it shows all the bones in the body at once.

Biopsy of the tumor: In a biopsy, the doctor takes out small pieces of the tumor. This is most often done during surgery, but it can also be done with a thin, hollow needle. The biopsy samples are checked for cancer cells, and other lab tests might be done on them as well. A biopsy is the only way to tell for sure if it is RMS.

Bone marrow biopsy: If RMS is found, a bone marrow biopsy is often done to see if the cancer has spread to the bone marrow (the soft, inner part of certain bones). This test is done with a hollow needle that is put into the bone marrow, usually in the hip bone. The test can be done either by itself or during surgery to biopsy or remove the main RMS tumor.

Lumbar puncture (spinal tap): This test is not always needed for RMS. It may be done if an RMS tumor in the head is near the covering of the brain (meninges). It is done by placing a needle in the back to remove a small amount of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord. This fluid is sent to the lab to look for cancer cells.

How serious is the cancer?

If you or your child has RMS, the doctor will want to find out some key pieces of information to help decide how to treat it. These include:

• The stage of the cancer, which is based on where it started, how big the tumor is and if it has grown into nearby areas or spread to other parts of the body
• The clinical group, which is based on the extent of the cancer and if it is removed completely during surgery
• The patient’s age
• If the RMS cells have certain gene changes

Once these things are known, they are used to put the tumor into a risk group (low, intermediate, or high), which is then used to guide treatment. The higher the risk, the more intense the treatment will likely need to be.

We know this can be confusing. If you have any questions about the stages or risk groups, ask the doctor or nurse to explain it to you.

What kind of treatment will I (or my child) need?

The main treatments for RMS are:

• Surgery
• Chemotherapy (chemo)
• Radiation treatment

The treatment plan will depend on:

• The risk group of the cancer
• A person’s age and overall health
• Concerns about treatment side effects

Surgery

Surgery may be a biopsy to tell if a tumor is RMS or to remove the tumor(s).

Surgery to remove the tumor is part of treatment for nearly all patients with RMS if it can be done safely without causing damage or disfigurement. If not, other treatments (like chemo and/or radiation) might be done first. If the tumor shrinks enough, surgery can be done later.

The type of surgery done (and the type of surgeon who does it) depends on where the tumor is. Ask your cancer care team what kind of surgery will be needed and what to expect.

Side effects of surgery

Any type of surgery can have risks such as bleeding, infections, and scarring. Be sure to ask the doctor what to expect from your (child’s) planned surgery. If you have problems, let your doctors know.

Chemotherapy (chemo)

Chemo is the use of drugs to kill cancer cells. These drugs go into the bloodstream and spread to cells all over the body. Chemo is important for all patients with RMS. If chemo is not used, the cancer is likely to come back.

To treat RMS, two or more chemo drugs are given. Chemo is typically given once a week for the first few months, and then less often. The total length of chemo often ranges from 6 months to more than a year.

Side effects of chemo

Chemo can have short-term side effects like:

• Hair loss
• Mouth sores
• Loss of appetite
• Nausea and vomiting
• Diarrhea or constipation
• Feeling tired (from low red blood cells, called anemia)
• Bruising or bleeding easily (from low platelets, called thrombocytopenia)
• Increased risk of infections (from low white blood cells, called leukopenia)

There are ways to lessen and treat many chemo side effects. Be sure to tell the cancer care team about any side effects so they can help.

There are also long-term side effects of chemo drugs. The long-term side effects you may be at risk of depend on what drugs are part of your treatment. Talk with your cancer care team to learn more.

Radiation treatments

Radiation uses high-energy rays (like x-rays) to kill cancer cells. It can be used after surgery to try to kill any cancer cells that might have been left behind. Or it might be used instead of surgery if all of the cancer cannot be removed. Radiation can also help treat symptoms like pain and swelling if the cancer has come back and more surgery cannot be done.

Getting radiation is a lot like getting an x-ray. Although the radiation is stronger, it is still painless. Treatments are usually given 5 days a week for several weeks.

Side effects of radiation treatments

If the doctor suggests radiation treatment, ask about what side effects might happen. Side effects depend on the type of radiation that is used and the part of the body being treated. Common side effects of radiation are:

• Feeling tired
• Skin changes and hair loss where the radiation is given
• Feeling sick to your stomach or having loose stools if the radiation is aimed at the belly area
• Mouth sores, trouble swallowing or low appetite if the radiation is aimed at the head or neck

Radiation also can cause some long-term side effects in children. Talk to the cancer care team about what to expect.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. But they might not be right for everyone. If you do sign up for a clinical trial, you can always stop at any time.

If you would like to learn more about clinical trials, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

What about other treatments that I hear about?

You might hear about other ways to treat the cancer or its symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things.

Some of these might help, but many have not been tested. Some have been shown not to help. A few may be harmful or unsafe when combined with other treatments your cancer care team may suggest. Talk to your doctor about anything you are thinking about using, whether it is a vitamin, a special diet, or anything else.

What will happen after treatment?

You will be glad when treatment is over. But it can be hard not to worry about cancer coming back. Even when cancer never comes back, people still worry about it. For years after treatment ends, it is still important to see the cancer doctor. Be sure to go to all of these follow-up visits. Exams and other tests will be done to see if the cancer has come back and to check for long-term side effects from cancer treatments.

At first, these visits may be every month or so. Then, as long as no cancer is found, the visits are needed less often.