View All Pages

Rhabdomyosarcoma - Childhood - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Rhabdomyosarcoma. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

About sarcoma

Soft tissue sarcoma (STS) is a cancer that develops in the tissues that support and connect the body. It can occur in fat, muscle, nerves, tendons, joints, blood vessels, or lymph vessels. Tumors begin when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread. In general, sarcomas are uncommon cancerous tumors, accounting for about 1% of all cancers.

About rhabdomyosarcoma

Rhabdomyosarcoma is a type of STS that begins in mesenchymal cells, which areimmature cells that normally become muscle. It develops in a type of muscle called striated muscle. Striated muscles are the skeletal voluntary muscles, which are the muscles of the arms, legs, and rest of the body that people can control. Rhabdomyosarcoma is most frequently found in children and young adults.

Rhabdomyosarcoma can occur anywhere in the body:

  • Head and neck: about 40% of all rhabdomyosarcoma cases in children. This includes parameningeal sites (near the membranes covering the brain), 25%; eye socket, 8%; and other head and neck locations, 7%.

  • Urinary or reproductive organs: about 30% of cases

  • Arms or legs: about 15% of cases

  • Other sites: about 15% of cases. This includes the trunk (torso), intrathoracic (inside the lung and/or chest), biliary tract, retroperitoneal, pelvic, and perineal sites (close to the anus, vagina, and urinary structures).

Types of rhabdomyosarcoma

Each rhabdomyosarcoma tumor is classified as either favorable or unfavorable based on its histology, which is what the cells look like under a microscope. The terms “favorable” and “unfavorable” refer to the appearance of the cancer cells. In general, the more cancer cells look like normal cells, the more “favorable” they are and the greater the chance that treatment will be successful.

Favorable histology tumors include the following:

  • Embryonal rhabdomyosarcoma.This is the most common type of rhabdomyosarcoma, frequently found in the head and neck and in the reproductive and urinary organs.

    • Botryoid rhabdomyosarcoma. This is a subtype of embryonal rhabdomyosarcoma, found most often in hollow organs, such as the bladder or the vagina.

    • Spindle rhabdomyosarcoma. This is another subtype of embryonal rhabdomyosarcoma, found most often in the area around a boy’s testicles.

Unfavorable histology tumors include the following:

  • Alveolar rhabdomyosarcoma. This is a more aggressive type of rhabdomyosarcoma, found most often in the arms, legs, or trunk of the body.

  • Pleomorphic and undifferentiated rhabdomyosarcoma. These are the rarest types of rhabdomyosarcoma of children, found most commonly in the arms, legs, or trunk. This type of rhabdomyosarcoma is more common in adults.

This section covers rhabdomyosarcoma diagnosed in children. Learn more about soft tissue sarcoma in adults.

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note these links will take you to other sections on Cancer.Net:

  • Cancer.Net Patient Education Videos:  View short videos on childhood cancer and sarcoma led by ASCO experts that provide basic information and areas of research.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find information about how many children are diagnosed with this type of cancer each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

About 350 children are diagnosed with rhabdomyosarcoma each year. More than half of childhood rhabdomyosarcomas are diagnosed in those under age 10. Rhabdomyosarcoma accounts for 3% of all new childhood cancers each year in the United States. It is the most common soft tissue sarcoma in children.

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for children younger than 14 is 69% overall. However, the rate varies widely depending on the tumor location, stage and risk group, and the child’s age.

The 5-year survival rate for children who have low-risk rhabdomyosarcoma is greater than 90%. The 5-year survival rate for children in the immediate risk group ranges from 60% to 80%. When the cancer becomes high risk, spreading widely in the body, the 5-year survival rate ranges from 20% to 40%.

It is important to remember that statistics on how many children survive this type of cancer are an estimate. The estimate comes from data based on children with this cancer in the United States each year. So, your own child’s risk may be different. Doctors cannot say for sure how long any child will live with rhabdomyosarcoma. Also, experts measure survival statistics in 5 year increments, meaning estimates, may not show the results treatment improvements for some time. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society’s (ACS) publication, Cancer Facts & Figures 2016, and the ACS website.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. Or, use the menu on the left side of your screen to choose another section to continue reading this guide.

Rhabdomyosarcoma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find out more about what factors increase the chance of this type of cancer. To see other pages, use the menu.

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:

A few cases of rhabdomyosarcoma have been associated with some congenital anomalies, which are abnormalities present at birth. Parental use of cocaine and marijuana before a child’s birth may increase a child’s risk of developing rhabdomyosarcoma.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

Children with rhabdomyosarcoma may or may not experience the following signs or symptoms (see the table below). It is also possible that the cause of a symptom may be from another medical condition that is not related to cancer.

If you are concerned about any changes you experience, please talk with your child’s doctor. Because rhabdomyosarcoma occurs most often in areas that cause noticeable symptoms, it is often diagnosed early. A small, visible, painless lump often forms near the surface of the body, where it is more easily spotted. The symptoms of a less obvious tumor can vary depending on where it is located in the body. A larger tumor may cause pain if it is pushing on nerves or other areas of the body.

Location of Tumor


Nasal cavity


Symptoms similar to a sinus infection


Earaches, bleeding, or discharge from the ear canal

Mass growing from the ear canal

Behind the eye

May cause the eye to bulge or swell

May make the child look cross-eyed

Bladder, urinary tract, vagina, or testicle

May cause blood in the urine and make urinating difficult

Bleeding from the vagina

Mass growing from the vagina

Rapid growth around the testicles

Abdomen or pelvis

Abdominal pain



Arm or leg muscle

Mass, growth, lump, bump, or swelling in the leg or arm that may or may not be painful

If the cancer has spread, the child may experience a chronic cough, bone pain, enlarged lymph nodes, weakness, or weight loss.

Your child’s doctor will ask you questions about the symptoms your child is experiencing to help find out the cause of the problem, called a diagnosis. This may include how long your child has been experiencing the symptom(s) and how often.

If cancer is diagnosed, relieving symptoms and side effects remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

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. To see other pages, use the menu

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 this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. 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 whether 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.

This list describes options for diagnosing this type of cancer, and not all tests listed 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 signs and symptoms

  • Your age and medical condition

  • 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 removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. 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 then 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 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. Bone marrow has both a solid and a liquid part. A bone marrow biopsy is the removal of a small amount of solid tissue using a 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. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia may be used.

Imaging tests

To determine where the cancer is located and if it has spread, the doctor may use some of the following imaging tests:

  • X-ray. An x-ray is a way to create a picture of the structures inside of the body using a small amount of radiation.

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a contrast medium (a special dye) is injected into a patient’s vein or given orally (by mouth) to provide better detail.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. A contrast medium may be injected into a patient’s vein or given orally (by mouth) to create a clearer picture.

  • Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. 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 gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

  • Positron emission tomography (PET) or PET-CT scan. 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 PET scan is a way to create pictures of organs and tissues inside the body. 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. 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 all of the results with you. If the diagnosis is cancer, these results will also help the doctor describe the cancer; this is called the stage.

The next section in this guide is Stages and Groups. It explains the system doctors use to describe the extent of the disease. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Stages and Groups

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. The tumor’s Clinical Group describes whether it can be removed by surgery. To see other pages, use the menu.

Doctors use both a grouping system and a staging system to describe rhabdomyosarcoma. Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to determine the cancer’s stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient’s prognosis (chance of recovery). There are different stage descriptions for different types of cancer.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

  • Tumor (T): How large is the primary tumor? Where is it located?

  • Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

  • Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

IRS Clinical Group 

The Clinical Group is based on whether a surgeon can remove the tumor. The Intergroup Rhabdomyosarcoma Studies (IRS) designed the following grouping and staging guidelines:

Group I: Describes a tumor that can be completely removed by surgery.

Group II: Describes a tumor that has been removed with surgery, but cancer cells remain at the edge of the tissue that surrounded the tumor (called a margin), and/or cancer cells are in the regional lymph nodes (lymph nodes near the site of the tumor).

Group III: Describes a local tumor. A local tumor is a tumor that has not spread outside of the area where it started and cannot be removed by surgery.

Group IV: Describes distant metastases. A distant metastasis is cancer that has spread through the lymph system or blood to other parts of the body.

IRS-modified TNM stage

Stage 1: Describes a local tumor in the orbit (the area near the eye); head and neck area, except for parameningeal sites; or a genitourinary tract tumor, except for a tumor in the bladder or prostate.

Stage 2: Describes a small local tumor in any part of the body not in Stage 1. The tumor is smaller than 5 centimeters (cm), and there is no spread to regional lymph nodes.

Stage 3: Describes a local tumor in any part of the body not included in Stage 1 that is larger than 5 cm in diameter and/or has spread to regional lymph nodes.

Stage 4: Distant metastases are present at diagnosis. The primary tumor can be of any size or location.

Recurrent: Recurrent cancer is cancer that has come back after treatment. If there is a recurrence, the cancer may need to be staged again (called re-staging) using the system above.

Source: Soft Tissue Sarcoma Committee of the Children's Oncology Group (COG).    

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of cancer. To see other pages, use the menu.

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’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare the standard of care with newer treatments that may be more effective. The “standard of care” is the best treatment known. 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 devoted exclusively to 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 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.  

Treatment overview

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 and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for rhabdomyosarcoma are listed below. 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 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. Also, talk about the goals of each treatment with the doctor and what your child can expect while receiving the treatment. Learn more about making treatment decisions.


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

Even children who have a rhabdomyosarcoma tumor that can be completely removed by surgery still require chemotherapy (see below). If the tumor cannot be completely removed or is unable to be removed by surgery, it is called inoperable or unresectable. If a tumor is inoperable, the cancer is treated with chemotherapy and radiation therapy to kill the cancer cells. If a tumor is unresectable, a biopsy is needed to determine the type of tumor (see Diagnosis).

Learn more about the basics of cancer surgery.

Chemotherapy and Risk Groups

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a pediatric or medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or a pill or capsule that is swallowed (orally).

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

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

  • low risk

  • intermediate risk

  • and high risk.

The idea is that the intensity of the therapy can be made less if the chance of the cancer coming back is lower. Nearly all children with rhabdomyosarcoma are treated on clinical trials. In this way, a very good standard of care can be delivered and compared to new combinations of treatment already showing promise, in order to find out what the next best standard treatment should become. 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.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. The side effects most common for the specific drugs used to treat rhabdomyosarcoma are listed below.

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

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

  • Irinotecan: Loose bowel movements.

  • Ifosfamide and etoposide: Nausea, vomiting, bone marrow suppression, and decreased kidney function.

  • Temozolomide: 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, intensive therapy used for intermediate- and high-risk rhabdomyosarcoma may cause permanent infertility (inability to have a child). Talk with your 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 and preparing for treatment. The medications used to treat cancer are constantly being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications. Learn more about your child’s prescriptions by using searchable drug databases.

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 (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.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. Talk with the doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with the health care team about the possible side effects of your child’s specific treatment plan and palliative care options. And during and after treatment, be sure to tell the doctor or another health care team member if your child is experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.   

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’s important to talk with your child’s doctor about the possibility of the cancer returning. Understanding your 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 does return 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).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After 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 for recurrent rhabdomyosarcoma are offered at specialized centers. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

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

If treatment fails

Although treatment is successful for the majority of 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 in children with higher risk disease 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 doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than 6 months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to 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.

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. Or, use the menu to choose another section to continue reading this guide. 

Rhabdomyosarcoma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with rhabdomyosarcoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in a clinical trial.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating rhabdomyosarcoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with rhabdomyosarcoma.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for rhabdomyosarcoma, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.    

Rhabdomyosarcoma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu.

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 diagnostic and treatment options best for your child.

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

  • Higher-risk rhabdomyosarcoma. For children with higher risk disease, research is aimed at finding more treatment options. A study of intermediate-risk patients, started in 2006 and recently completed, is testing whether the combination of irinotecan/vincristine, added to VAC chemotherapy, improves the success of this approach. This study is also testing whether the early use of local radiation therapy will decrease local recurrences. Also, a new European study is testing whether the addition of doxorubicin might improve survival.

    A recently completed COG study for high-risk rhabdomyosarcoma tested whether irinotecan, vincristine, and chemotherapy given every 2 weeks improves outcome. While some improvement for children less than 10 years old with embryonal rhabdomyosarcoma, no significant improvement was seen from this study.

  • Kinase inhibitors. Kinase inhibitors are a form of so-called “targeted therapy,” or 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 normal cells, usually leading to fewer side effects than other cancer medications. For patients with high-risk disease, current research is evaluating a type of targeted therapy that blocks the nutrients needed for a tumor to grow and spread. Learn more about targeted treatments.

  • New approaches to treatment. Research to improve understanding of rhabdomyosarcoma and how drugs affect this disease are also being performed. Investigations into the importance of gene translocations in rhabdomyosarcoma are underway. Identifying these translocations may be better than conventional methods of identification in distinguishing between the 2 major types of rhabdomyosarcoma. Research about new treatments, including the use of human rhabdomyosarcoma growing as a tumor xenograft (tissue taken from a healthy part of the body to replace unhealthy tissue in another part of the body), are ongoing.

  • Tissue collection. All children with rhabdomyosarcoma are encouraged to enroll on the COG study D9902. This study collects tumor and bone marrow samples that are not needed for diagnosis so that scientists can learn more about the disease.

Looking for More about Latest Research?

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

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

Every cancer treatment can cause side effects or changes to your child’s body and how he or she feels. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care.” It is an important part of your child’s treatment plan, regardless of his or her age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for rhabdomyosarcoma are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your child’s general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your family can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Learn more about managing financial considerations, in a separate part of this website.

Caring for a child with cancer

Family members and friends often play an important role in taking care of a person with rhabdomyosarcoma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

When your child has rhabdomyosarcoma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of check-ups after your child finishes cancer treatment. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

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. To see other pages, use the menu.

Care for children diagnosed with cancer doesn’t 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.  

Learn more about the importance of follow-up care.

Watching for recurrence

One 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 also 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 originally diagnosed and the types of treatment given.

Managing long-term effects of childhood cancer

Sometimes side effects may linger beyond the active treatment period or occur months or years later. These are called long-term, or late-effects. Late effects can include physical (such as heart and lung problems or second cancers), cognitive (memory, attention, or learning difficulties), and/or emotional problems (such as anxiety or depression).

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 in 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 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.

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 an 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 growth abnormalities, bladder dysfunction, infertility, and the possibility of a secondary 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 COG has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, the 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:

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child receives and develop a survivorship care plan once treatment is completed.

Some children continue to see their oncologist, while others transition back to the general care of their family 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 your health care team about your child’s ongoing medical care and any concerns you have about his or her 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 him or her, as well as 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 his or her lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. To see other pages, use the menu.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every patient and his or her family. 

After active cancer treatment ends, children and their families may experience a mixture of feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain of how to cope with everyday life.

One source of stress may occur when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving in this article.

Healthy living after cancer

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

In addition, it is important that your child has recommended medical check-ups and tests (see Follow-up Care) to take care of his or her health. Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical 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 and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Doctor to help start conversations with your child’s cancer care team. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

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

Talking often with the doctor 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 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, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage his or her care.

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 treatment

  • What are my child’s treatment options?

  • What clinical trials are available 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 he or she be able to go to school and perform his or her 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?

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 I received?

  • What follow-up tests will my child need, and how often will he or she need them?

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

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

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

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

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide.  

Rhabdomyosarcoma - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Rhabdomyosarcoma. To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood Rhabdomyosarcoma. Use the menu to select another section to continue reading this guide.