Diagnosis
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. A biopsy is used to confirm the diagnosis.
Imaging tests
Imaging tests make pictures of the inside of the body. They can help show the location and size of a rhabdomyosarcoma.
Tests may include:
CT and MRI also may be used later to look for cancer that has spread.
Biopsy
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 cancer.
Types of biopsy procedures used to diagnose rhabdomyosarcoma include:
- Core needle biopsy. This method uses a needle to remove tissue samples from the tumor. Healthcare professionals usually try to take samples from several parts of the cancer.
- Surgical biopsy. In some cases, your healthcare professional might suggest surgery to get a larger sample of tissue. This may be needed if a core needle biopsy does not provide enough tissue or a clear diagnosis.
A pathologist with experience diagnosing rhabdomyosarcomas should look at the biopsy sample. The pathologist looks at the tissue under a microscope to see if the cells are cancerous. Other tests in the lab show more details about the cancer cells, such as what type of rhabdomyosarcoma cells they are. Understanding the type is important because it can affect treatment decisions.
Gene testing the tumor
A biopsy sample also may be tested for gene changes. If the tumor cells have gene changes, it may help make clear what type of rhabdomyosarcoma you have. There are many types of gene changes, such as the fusion of two genes. Some fusions have a good outlook. Others have a poor outlook.
Gene changes also can affect treatment recommendations. For example, rhabdomyosarcoma with a FOXO1 gene fusion with the PAX gene can have a poor outlook and may need more treatment compared with rhabdomyosarcoma without the FOXO1 fusion.
Staging tests
After rhabdomyosarcoma is diagnosed, the care team does tests to find out how much cancer is in the body and whether it has spread. This process is called staging. The results help the care team plan treatment.
Tests used for staging may include:
- CT scan. A CT scan can help show if cancer has spread to organs such as the lungs.
- MRI. An MRI scan can help show tumors located in the head, neck, arms and legs, and nearby structures such as blood vessels and nerves.
- Positron emission tomography (PET) scan. PET scans may be used to look for cancer in bones, lymph nodes and other parts of the body.
- Bone marrow biopsy and aspiration. This test can help show if cancer is in the bone marrow.
- Lymph node biopsy. This test checks for cancer spread to lymph nodes. The healthcare team chooses what lymph nodes to test partly based on where the tumor started.
- Lumbar puncture. This procedure, also called a spinal tap, removes some of the fluid around the brain and spinal cord. That fluid is tested for cancer cells. It may be used for some head and neck tumors if imaging shows cancer may have reached tissues around the brain or spinal cord.
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Treatment
Rhabdomyosarcoma treatment depends on the tumor's location, stage and risk group and whether it has gene changes. Treatment usually combines chemotherapy with surgery, radiation therapy or both.
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 can use other treatments to kill cancer cells that might be left. This might include chemotherapy and radiation. Sometimes these treatments are given first to shrink the tumor before surgery.
Chemotherapy
Chemotherapy treats cancer with strong medicines. Almost everyone with rhabdomyosarcoma gets chemotherapy, even after surgery that removes all of the tumor. Chemotherapy can treat any cancer cells that may remain in the body.
Many chemotherapy medicines exist. Treatment often involves a combination of medicines. Most chemotherapy medicines are given through a vein. Some come in pill form. Which medicines are used and how much treatment is needed depend in part on the cancer's risk group.
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 and other sources.
Radiation therapy may be recommended after surgery and chemotherapy. It can help kill cancer cells that might be left. Radiation also may be used instead of surgery. For example, it may be used if the cancer is in an area where surgery isn't possible because of nearby organs.
Radiation therapy also may be used to shrink tumors and relieve symptoms such as pain or trouble breathing when cancer has spread and cannot be cured.
Treatment side effects
Rhabdomyosarcoma treatment can cause many side effects. Some may happen right away. Others may affect you years later. The risks depend on the treatments used, the doses, the area of the body treated and age.
Surgery can change how a part of the body looks or works. Some people may need rehabilitation after surgery. Radiation therapy can affect the growth of bones and other tissues, especially in children. Over time, it may cause symptoms such as limited joint movement or scarring of soft tissue.
Chemotherapy can cause different side effects depending on the medicines used. Some medicines used for rhabdomyosarcoma can affect the nerves, the bladder and the ability to have children in the future, called fertility. Chemotherapy and radiation therapy also can increase the risk of another cancer later in life.
Your healthcare team can explain the short- and long-term effects that are most likely with your treatment plan.
Clinical trials
Clinical trials are studies of new treatments or new ways of using existing treatments. Clinical trials can offer 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.
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Clinical trials
Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this condition.
Coping and support
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 what to expect may make treatment decisions feel more manageable. If your child has cancer, ask the healthcare team for help talking with your child about the cancer and treatment.
- Find someone to talk with. Find a good listener who is willing to listen to you talk about your hopes and fears. This may be a friend or family member. Meeting with a counselor, medical social worker, clergy member or cancer support group also may be helpful. For children and teens, a child life specialist also may help them understand and cope with cancer and treatment.
- Ask others for support. If you have trusted friends, family or community members, those relationships may help you deal with rhabdomyosarcoma. For example, family or friends might help with things such as taking care of your home while you're in the hospital. They also can give emotional support when you feel overwhelmed. Your care team also can help connect you with support services and resources. Help children stay in touch with friends. This could be through video chats or text messages.
Preparing for your appointment
Start by making an appointment with your or your child's primary care professional. If there's a concern about rhabdomyosarcoma, you or your child may be referred to a cancer specialist.
For a child or teenager with rhabdomyosarcoma, ask about a children's cancer center. A children's cancer center can help you find support and specialists. Children and teenagers with rhabdomyosarcoma should be treated by a team with experience in treating childhood cancers. Children's cancer centers have teams of specialists experienced in treating cancers in children and teenagers and may offer clinical trials and newer treatments.
A team of specialists for rhabdomyosarcoma 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 diagnose the type of cancer, called pathologists.
- Rehabilitation specialists who can help in recovery after surgery, called physical medicine and rehab.
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 you take, 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.
It also can be helpful to:
- 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 rhabdomyosarcoma is this?
- Where is the tumor and has the cancer spread?
- Are more tests needed?
- What are the treatment options?
- What is the cancer's stage and risk group? What do those mean?
- What is the goal of treatment?
- What are the chances that treatment will cure this cancer?
- What are the side effects and risks of each treatment?
- How much experience does your team have with treating rhabdomyosarcoma?
- Are there clinical trials to think about?
- 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?
- Have the symptoms changed over time?
- How severe are the symptoms?
- What, if anything, seems to make the symptoms better?
- What, if anything, seems to make the symptoms worse?
Sept. 18, 2026