Rhabdomyosarcoma is a rare soft tissue cancer that typically affects children and teenagers but can also affect adults. You can develop rhabdomyosarcoma anywhere in your body, but it usually affects muscles in your arms, legs, head and neck, and abdomen (belly). Oncologists can treat and sometimes cure rhabdomyosarcoma, but the condition can come back.
Rhabdomyosarcoma is a rare type of cancer known as soft tissue sarcoma. It develops in your skeletal muscles. Rhabdomyosarcoma mostly affects children and teenagers but can affect adults as well. Each year, between 400 and 500 people in the U.S. receive a diagnosis of rhabdomyosarcoma.
There are different types of rhabdomyosarcomas, some of which are aggressive and more difficult to treat. In some cases, treatment often puts the condition into remission, but rhabdomyosarcoma can come back (cancer recurrence).
There are several types of rhabdomyosarcomas:
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Symptoms vary depending on the tumor’s location. For example, a tumor in your child’s ear may cause earache or discharge from their ear. A tumor behind your eye may make it swell or bulge out of the socket. Other symptoms by tumor location include:
Rhabdomyosarcoma symptoms may resemble less serious conditions. Many health issues can cause symptoms like nosebleeds, vomiting or lumps and bumps and may not be symptoms of rhabdomyosarcoma. That being said, you should contact a healthcare provider if you or your child have symptoms or changes that don’t go away or seem to be getting worse.
Rhabdomyosarcoma happens when immature muscle cells mutate, becoming cancerous cells that multiply and create tumors. Certain genetic mutations, including a change that creates the fusion gene PAX/FOX01, may cause a type of rhabdomyosarcoma. People with certain inherited disorders have an increased risk of developing the condition:
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A healthcare provider will ask about your or your child’s symptoms. They’ll also ask about your family medical history to learn if anyone has an inherited disorder that increases the risk of rhabdomyosarcoma.
They’ll do a physical examination to look for symptoms like lumps or growths. Providers may do the following tests to diagnose rhabdomyosarcoma:
No, it doesn’t. Your or your child’s oncologist may order blood tests after they diagnose rhabdomyosarcoma. For example, they may do a complete blood count (CBC) test to see if the condition has spread to your bone marrow. They may do blood tests to monitor rhabdomyosarcoma treatment.
Oncologists who care for children with rhabdomyosarcoma classify the condition by risk group. They establish risk group classification based on three factors:
Risk group classifications are low risk, intermediate risk and high risk. Your child’s oncology team uses risk group classification to plan treatment, assess the chance the tumor will come back after treatment and establish a prognosis, or what you can expect to happen after treatment.
The risk group classification process relies on very specific health information. You may not understand all the factors that go into establishing the risk group classification process. Don’t hesitate to ask your child’s care team to explain all the information they use to place your child’s case in a specific risk group. They’ll be glad to explain the process and what it means for your child’s treatment and prognosis.
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Treatment varies depending on the condition type. Rhabdomyosarcoma is a rare disease; if you or your child has it, ask the cancer care team about participating in a clinical trial. In general, oncologists use the following treatments:
Sometimes, treatment can cure rhabdomyosarcoma. This is called remission, which means that you don’t have symptoms and tests don’t detect signs of cancer. In many cases, remission is permanent, but rhabdomyosarcoma can come back. In general, adults are less likely to be cured than children.
There’s no data on how long someone with rhabdomyosarcoma can expect to live. Researchers do track the percentage of people who were alive five years after receiving a diagnosis of rhabdomyosarcoma.
Survival rates vary widely depending on factors like the type of rhabdomyosarcoma, risk group classification and whether the condition comes back after treatment. Overall, 70% of children with this condition were alive five years after diagnosis. The five-year survival rate for adults is 20%.
Regardless of your situation, it’s important to remember that survival rates are estimates based on the experiences of other people who receive treatment for rhabdomyosarcoma. If you or your child have this condition, it’s understandable that you may want to know what to expect. If that’s your situation, your oncology team is your best resource for information.
Cancer disrupts your daily life, and rhabdomyosarcoma is no exception. If you or your child have this condition, you may feel overwhelmed and under stress. Here are some suggestions that may help:
If you or your child are receiving treatment, contact your oncologist if treatment side effects are stronger than you expect. Depending on your situation, your oncologist may have specific guidance on symptoms that could mean rhabdomyosarcoma is spreading or coming back. Don’t hesitate to contact them with your concerns.
Rhabdomyosarcoma is a rare disease. You may not know much about it and have questions about what you can expect, whether you have the condition or your child has it. Here are some suggestions:
Rhabdomyosarcoma is a very rare cancer. Experts don’t know all the reasons why it happens. If you or your child have rhabdomyosarcoma, you may feel frustrated because experts don’t know the exact cause. Your healthcare team understands those feelings. While they may not be able to explain why you or your child have rhabdomyosarcoma, they can explain the diagnosis and potential treatments, including participating in clinical trials. They’ll also help you identify resources, like support groups or specialized care.
Last reviewed on 01/12/2024.
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Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy