ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with rhabdomyosarcoma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children and teens are diagnosed with rhabdomyosarcoma?

About 400 to 500 people are diagnosed with rhabdomyosarcoma each year. Most people who are diagnosed with rhabdomyosarcoma are children or teens. More than half of childhood rhabdomyosarcomas are diagnosed in those under age 10. Each year in the United States, rhabdomyosarcoma accounts for 3% of cancers in children ages 0 to 14 and 1% of cancers in teens ages 15 to 19. It is the most common soft-tissue sarcoma in children. Boys are slightly more likely to develop the disease than girls.

What is the survival rate for children and teens with rhabdomyosarcoma?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from rhabdomyosarcoma. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with rhabdomyosarcoma are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for children and teens with rhabdomyosarcoma are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate for children younger than 15 is 71%. The 5-year relative survival rate for teens ages 15 to 19 is 54%.

The survival rates for children and teens with rhabdomyosarcoma vary based on several factors. These include the stage and risk group of cancer, a person’s age and general health, and how well the treatment plan works. Other factors that can affect outcomes include the tumor type, location, and surgery results.

Children ages 1 to 9 have a better prognosis than people in other age groups. Prognosis is the chance of recovery. The 5-year relative survival rate for children who have low-risk rhabdomyosarcoma ranges from 70% to more than 90%. The 5-year relative survival rate for children in the intermediate-risk group ranges from about 50% to 70%. When the cancer becomes high risk, spreading widely in the body, the 5-year relative survival rate ranges from 20% to 30%.

Experts measure relative survival rate statistics for children and teens with rhabdomyosarcoma every 5 years. This means the estimate may not reflect the results of advancements in how rhabdomyosarcoma in children and teens is diagnosed or treated over the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society website. Additional source was: Seigel R, et al.: Cancer Statistics 2023. CA: A Cancer Journal for Clinicians. 2023 Jan; 73(1):17–48. doi/full/10.3322/caac.21763. (All sources accessed March 2023.)

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by rhabdomyosarcoma. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find out more about what factors increase the chance of developing rhabdomyosarcoma. Use the menu to see other pages.

What are the risk factors for rhabdomyosarcoma?

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Doctors and researchers don’t know what causes most childhood cancers. In most cases of rhabdomyosarcoma, there are no clear risk factors. However, it has been shown that children who have the following rare, inherited conditions have a somewhat higher risk of developing rhabdomyosarcoma:

• Li-Fraumeni syndrome

• Beckwith-Wiedemann syndrome

• Neurofibromatosis

• Costello syndrome

• Cardio-facio-cutaneous syndrome

The next section in this guide is Symptoms and Signs. It explains what changes or medical problems rhabdomyosarcoma can cause. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How rhabdomyosarcoma is diagnosed

There are different tests used for diagnosing rhabdomyosarcoma. Not all tests described here will be used for every person. Your child’s doctor may consider these factors when choosing a diagnostic test:

• The type of cancer suspected

• Your child’s signs and symptoms

• Your child’s age and general health

• The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose rhabdomyosarcoma:

• Biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During biopsy, a small amount of tissue is removed for examination under a microscope. The type of biopsy performed will depend on the location of the cancer. If the tumor is near the surface of the body, the child will be given a local anesthetic to numb the area during the procedure. If it is deeper inside the body, a general anesthetic (medication to block the awareness of pain) will be used. A pathologist analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

• Immunocytochemistry tests. These are special stains done on the cells taken during the biopsy to help the doctor make an accurate diagnosis of rhabdomyosarcoma. Stains that show muscle cell development, including actin, desmin, MyoD-1, and Myogenin, are most helpful.

• Genetic tests of tumor tissue. Chromosomes are structures that contain the genes in a cell. Changes in certain chromosomes in the tumor cells, called chromosomal translocations, can help doctors identify the alveolar subtype of rhabdomyosarcoma (see Introduction), although some alveolar rhabdomyosarcomas lack any specific translocation. Doctors will do a genetic test of the tumor tissue, usually using a test called fluorescence in-situ hybridization (FISH test), to see if translocations have occurred.

• Bone marrow biopsy. The doctor may also perform a bone marrow biopsy. Rhabdomyosarcoma can spread to the bone marrow, and only a biopsy can find it there. A bone marrow biopsy is the removal of a small amount of tissue using a special needle. The sample(s) are then analyzed by a pathologist. A common site for a bone marrow biopsy is the pelvic bone, which is located in the lower back by the hip. Doctors generally give local anesthesia beforehand to numb the area. Stronger types of anesthesia can also be used to lessen pain.

Imaging tests

Imaging tests show pictures of the inside of the body. They can show if cancer has spread. To determine where the cancer is located and if it has spread, the doctor may use the following imaging tests:

• X-ray. An x-ray creates a picture of the structures inside of the body using a small amount of radiation.

• Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional (3D) image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail of the image. This dye can be injected into a patient’s vein or given as a liquid to swallow.

• Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a liquid to swallow.

• Bone scan. A bone scan looks at the inside of the bones using a radioactive tracer. The amount of radiation in the tracer is too low to be harmful. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears lighter to the camera, and areas of injury, such as those caused by cancer, stand out on the image.

• Positron emission tomography (PET) or PET-CT scan. A PET scan creates pictures of organs and tissues inside the body. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A small amount of a radioactive substance is injected into a patient’s body. This substance is absorbed mainly by organs and tissues that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. However, the amount of radiation in the substance is too low to be harmful. A scanner then detects this substance to produce images of the inside of the body.

After these diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is cancer, these results will also help the doctor describe the cancer. This is called staging.

The next section in this guide is Stages and Groups. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with rhabdomyosarcoma. Use the menu to see other pages.

In general, cancer in children is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatment known based on previous clinical trials. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

The Children’s Oncology Group (COG) is a National Cancer Institute-supported clinical trials cooperative group that does childhood and adolescent cancer research. The COG conducts national clinical trials that are available for children with rhabdomyosarcoma.

To take advantage of the latest treatments, children with cancer should be treated at a specialized pediatric cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

How rhabdomyosarcoma is treated

In many cases, a team of doctors works with a child and the family to provide care. This is called a multidisciplinary team. Pediatric cancer centers also often have extra support services for children and their families, such as child life specialists, dietitians, physical therapists, occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. Learn more about the clinicians who provide cancer care.

Children and adolescents with rhabdomyosarcoma require multidisciplinary therapy planning, which means using combinations of chemotherapy, surgery, and/or radiation therapy. Treatment options and recommendations depend on several factors, including the subtype, stage, and clinical group of rhabdomyosarcoma, possible side effects, and the patient’s preferences and overall health.

Take time to learn about your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect while receiving the treatment. These types of conversations are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your child's care. Shared decision-making is important for rhabdomyosarcoma because there are different treatment options. Learn more about making treatment decisions.

The common types of treatments used for rhabdomyosarcoma are described below. Your child’s care plan also includes treatment for symptoms and side effects, an important part of cancer care. Learn more about preparing your child for treatment.

READ MORE BELOW:

• Surgery

• Chemotherapy and risk groups

• Radiation therapy

• Physical, emotional, social, and financial effects of cancer

• Recurrent rhabdomyosarcoma

• If treatment does not work

Surgery

Surgery is the removal of the tumor and some surrounding tissue during an operation, leaving no trace of cancer in the healthy tissue; this is called a negative margin. Surgical oncologists and orthopedic oncologists are doctors who specialize in treating this type of cancer using surgery.

Surgery is usually the first treatment for childhood rhabdomyosarcoma, unless there are distant metastases. However, even when the rhabdomyosarcoma tumor can be completely removed by surgery, chemotherapy is still required afterwards (see below).

If the tumor cannot be completely removed or is unable to be removed by surgery, it is called inoperable or unresectable. In these cases, the cancer is treated with chemotherapy and radiation therapy to destroy the cancer cells. If a tumor is unresectable, a biopsy is needed to determine the type of tumor (see Diagnosis).

Before surgery, talk with your child's health care team about the possible side effects from the specific surgery your child will have. Learn more about the basics of cancer surgery.

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Chemotherapy and risk groups

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

Chemotherapy for rhabdomyosarcoma is given by injection into a vein. The drugs that are used most often in North America for rhabdomyosarcoma are vincristine (Vincasar), dactinomycin (Cosmegen), and cyclophosphamide (available as a generic drug). This combination of drugs is often called VAC.

Different studies are underway to continue determining the best medications and doses. Often, these studies are classified based on the likelihood (or the risk) that the disease will recur (come back).

There are 3 main risk groups for rhabdomyosarcoma:

• Low risk

• Intermediate risk

• High risk

The idea is that the intensity of the therapy can be reduced if the chance of the cancer coming back is lower. Nearly all children with rhabdomyosarcoma are treated on clinical trials. In this way, standard-of-care treatment can be given to patients and compared to new treatment combinations. In this way, researchers may find treatments that are better than the current standard of care. In the United States, most research on childhood rhabdomyosarcoma takes place through the COG. Other individual hospitals may also offer studies that are independent of the COG. Learn more about current COG studies for rhabdomyosarcoma. Please note that this link takes you to a separate website.

The side effects of chemotherapy depend on the particular drug and dose used, but they typically include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. Common side effects from the specific drugs used to treat rhabdomyosarcoma are listed below.

• VAC therapy: Nausea, vomiting, and bone marrow suppression, which means your child’s immune system function may be reduced, raising the risk of infection and other problems. Although very rare, a few patients may have significant liver damage.

• Doxorubicin (available as a generic drug): Nausea, vomiting, bone marrow suppression, and sores in the mouth. This drug may have long-term effects on the heart.

• Irinotecan (Camptosar): Loose bowel movements.

• Ifosfamide (Ifex) and etoposide (Etopophos): Nausea, vomiting, bone marrow suppression, and decreased kidney function.

• Temozolomide (Temodar): Nausea, vomiting, and bone marrow suppression.

Learn more about managing common side effects of cancer treatment. Most side effects usually go away once treatment is finished. However, long term effects are possible, including that intensive therapy used for intermediate-risk and high-risk rhabdomyosarcoma may cause permanent infertility (inability to have a child). Talk with your child's doctor about this possibility and whether your family should talk with a fertility specialist before cancer treatment begins.

Learn more about the basics of chemotherapy.

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Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation therapy given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

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Physical, emotional, social, and financial effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative and supportive care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments, such as chemotherapy, surgery, or radiation therapy, to improve symptoms.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns.

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website. 

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Recurrent rhabdomyosarcoma

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your child’s doctor about the possibility of the cancer returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, your child’s doctor will talk with you about treatment options. The treatment plan may involve chemotherapy, but it depends on how much of the tumor can be surgically removed, where the cancer recurred, and the treatment the child received previously. Often, new experimental treatments in clinical trials for recurrent rhabdomyosarcoma are offered at specialized centers. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

Children with recurrent cancer sometimes experience emotions such as disbelief or fear. Parents and their families are encouraged to talk with their child's health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

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If treatment does not work

Although treatment is successful for many children with cancer, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. In rare cases, this may occur during the original diagnosis and treatment or after initial therapy has been completed and there is a recurrence. The likelihood of treatment failure tends to be higher when there is higher risk disease (see Chemotherapy and risk groups) at the time of the original diagnosis.

This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier and more comfortable if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

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The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will read about the scientific research being done to learn more about rhabdomyosarcoma and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about rhabdomyosarcoma, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

• Low-risk rhabdomyosarcoma. For children with rhabdomyosarcoma at a low risk of recurrence, research is focused on decreasing the side effects of treatment by decreasing the total dose of chemotherapy, limiting radiation therapy, and decreasing the total length of time in treatment.

• Intermediate-risk rhabdomyosarcoma. For children with intermediate-risk rhabdomyosarcoma, clinical trials are aimed at testing the addition of newer targeted therapies, such as drugs that inhibit pathways that may be overexpressed in the tumor. Targeted therapies are medications that target specific cancer genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to healthy cells, usually leading to fewer side effects than other cancer medications. The recently completed Children's Oncology Group (COG) study for intermediate-risk rhabdomyosarcoma also investigated the duration of therapy by adding a period of maintenance therapy of low-dose chemotherapy following the initial course of treatment. Results from this study are still being evaluated.

• High-risk rhabdomyosarcoma. For children with high-risk rhabdomyosarcoma, research is aimed at finding new treatment options and better ways to deliver therapy. A recent COG study tested whether adding irinotecan/vincristine chemotherapy to standard vincristine, dactinomycin, and cyclophosphamide chemotherapy (VAC therapy; see Types of Treatment) might improve outcomes. While survival was the same between the 2 treatment regimens, the addition of irinotecan/vincristine did reduce some side effects with an overall lower dose of cyclophosphamide. Another COG study for high-risk rhabdomyosarcoma tested whether giving irinotecan, vincristine, and other chemotherapy every 2 weeks might improve outcomes. There was some improvement for children younger than 10 years old with embryonal rhabdomyosarcoma, but no significant improvement was seen from this study. The current COG study is studying a different formulation of vincristine, called vinorelbine (available as a generic drug), combined with dactinomycin and cyclophosphamide. This study is also looking at the length of therapy by including a maintenance phase of low-dose chemotherapy after the first round of treatment.

• Palliative and supportive care. Clinical trials are also underway to find better ways of reducing symptoms and side effects of current rhabdomyosarcoma treatments to improve patients’ comfort and quality of life.

• Kinase inhibitors. For patients with high-risk disease, current research is evaluating this type of targeted therapy, which blocks the nutrients needed for a tumor to grow and spread. Learn more about targeted treatments.

• New approaches to treatment. Research is ongoing to improve the understanding of rhabdomyosarcoma and how different drugs affect the disease. Studies examining gene translocations are very important. This research can help better classify a disease's risk group as well as improve ways to distinguish the type of rhabdomyosarcoma. Additionally, ongoing studies are collecting and transplanting human rhabdomyosarcoma cells into animal models (called tumor xenografts), which safely permit testing of new experimental drugs.

• Tissue collection. Families who have children with rhabdomyosarcoma are encouraged to consider enrolling their child in the COG study APEC14B1, "The Project: EveryChild Protocol: A Registry, Eligibility Screening, Biology and Outcome Study." This study collects tumor and tissue samples that are not needed for the child's own diagnosis, as well as demographic, treatment, and outcome information. Through this study, scientists can learn more about the disease's biology, investigate new treatments, and reduce short-term and long-term side effects.

Looking for More about Latest Research?

If you would like more information about the latest areas of research in rhabdomyosarcoma, explore these related items that take you outside of this guide:

• To find clinical trials specific to your child's diagnosis, talk with your child’s doctor or search online clinical trial databases.

• Learn more about current COG studies for rhabdomyosarcoma on the COG website.

• Get updates from Cancer.Net delivered right to your inbox. Subscribe to the Inside Cancer.Net email newsletter.

• Visit the website of Conquer Cancer, the ASCO Foundation, to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with rhabdomyosarcoma does not end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including rhabdomyosarcoma, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead.

Children treated for rhabdomyosarcoma should be monitored for signs or symptoms that the cancer has come back. Talk with your child’s doctor about what to watch for between appointments. If there is a recurrence, it is most common within the first 3 years after diagnosis. During this time, routine monitoring should include regular physical examinations and imaging studies at least every 3 to 6 months for the first 2 years after completing treatment. Children should be routinely monitored for their physical growth patterns, development of sexual maturity, and bladder function. If your child received radiation therapy to the eye or mouth, regular eye examinations and dental examinations are important.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

As explained above, a main goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Children with a tumor on an arm or leg may have decreased growth in the affected limb and differences in limb length as the child ages. This should be monitored, and a medical evaluation by an orthopedist (bone doctor) is recommended if this develops.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects, such as problems with physical growth and development, bladder problems, infertility, and the possibility of a second cancer, such as bone sarcoma, a brain tumor, or acute myeloid leukemia (AML). Follow-up care should address your child’s quality of life, including any developmental, cognitive, or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org. This site also includes a complimentary set of educational materials called “Health Links,” which provide additional information in lay language about a wide variety of potential late effects after cancer. Health links are available in a variety of languages.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment your child receives and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with your new doctor and all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout life.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to your family. You may want to print this list and bring it to your child’s next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

• Where exactly is the tumor located?

• Are more tests needed to confirm the diagnosis of rhabdomyosarcoma?

• How frequently do you treat patients with rhabdomyosarcoma?

• Can you explain my child’s pathology report (laboratory test results) to me?

• What group and stage is the tumor? What does this mean?

• Is the histology of the tumor favorable or unfavorable? What does this mean?

Questions to ask about choosing a treatment and managing side effects

• What are my child’s treatment options?

• What types of research are being done for rhabdomyosarcoma in clinical trials? Do clinical trials offer additional treatment options for my child?

• What treatment plan do you recommend? Why?

• What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

• Who will be part of my child’s health care team, and what does each member do?

• Who will be leading my child’s overall treatment?

• What are the possible side effects of this treatment, both in the short term and in the long term?

• How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

• Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should my family talk with a fertility specialist before cancer treatment begins?

• If I’m worried about managing the costs of cancer care, who can help me?

• What support services are available to my child? To my family?

• If I have questions or problems, who should I call?

Questions to ask about having surgery

• What type of surgery will my child have? Will lymph nodes be removed?

• How long will the operation take?

• How long will my child be in the hospital?

• Can you describe what my child’s recovery from surgery will be like?

• What are the possible long-term or late effects of having this surgery?

Questions to ask about having chemotherapy or targeted therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

• What side effects can my child expect during treatment?

• What can be done to prevent or relieve these side effects?

• What are the possible long-term or late effects of having this treatment?

• Who should I contact about any side effects my child experiences? And how soon?

Questions to ask about having radiation therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• What side effects can my child expect during treatment?

• What can be done to prevent or relieve these side effects?

• What are the possible long-term or late effects of having this treatment?

• Who should I contact about any side effects my child experiences? And how soon?

Questions to ask about planning follow-up care

• What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the cancer treatment my child received?

• What follow-up tests will my child need, and how often will those tests be needed?

• How do I get a treatment summary and survivorship care plan to keep in my personal records?

• When should my child return to their primary care doctor for regular medical care?

• Who will be leading my child’s follow-up care?

• What survivorship support services are available to my child? To my family?

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