Rhabdomyosarcoma - Childhood - Introduction

Approved by the Cancer.Net Editorial Board , 07/2022

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. Use the menu to see other pages. Think of that menu as a roadmap for this entire 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. Cancer begins 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, accounting for about 1% of all cancers.

About rhabdomyosarcoma

Rhabdomyosarcoma is a type of STS that typically begins in early skeletal muscle cells. It develops in a type of muscle called striated muscle, which are the voluntary 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, including:

  • 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.

  • Arm or leg: About 15% of cases.

  • Other locations: About 15% of cases. Areas include the trunk (torso), intrathoracic (inside the lung and/or chest), biliary tract, retroperitoneal (the area in the back of the abdomen), 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. It is frequently found in the head and neck and in the reproductive and urinary organs.

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

    • Spindle cell rhabdomyosarcoma. This is another subtype of embryonal rhabdomyosarcoma that is found most often in the area around the testicles.

Unfavorable histology tumors include the following:

  • Alveolar rhabdomyosarcoma. This is a more aggressive type of rhabdomyosarcoma that is found most often in an arm, leg, or trunk of the body. An alveolar rhabdomyosarcoma can be subdivided based on its genetic pattern. The doctor will run specialized testing on your child's tumor tissue to determine if there are any unique gene fusions present and may recommend different treatments based on the molecular pattern of your child's tumor (see Types of Treatment ).

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

This section covers rhabdomyosarcoma diagnosed in children, also called pediatric rhabdomyosarcoma. Learn more about soft tissue sarcoma in adults .

Looking for More of an Introduction?

If you would like more of an introduction, explore this related item. Please note that this link will take you to another page on Cancer.Net:

  • Cancer.Net Patient Education Video: View a short video on sarcoma led by an American Society of Clinical Oncology (ASCO) expert that provides basic information and areas of research.

The next section in this guide is Statistics . It helps explain the number of children and teens who are diagnosed with this disease and general survival rates. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Statistics

Approved by the Cancer.Net Editorial Board , 03/2023

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 from 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.

Rhabdomyosarcoma - Childhood - Medical Illustrations

Approved by the Cancer.Net Editorial Board , 07/2022

ON THIS PAGE: You will find a basic drawing of the common body parts affected by this disease. Use the menu to see other pages.

This illustration shows areas in a child’s body where a rhabdomyosarcoma is most likely to occur. In the head and neck area, this includes the base of the skull, the muscles of the orbit (eye socket), the nasal cavity, which is the air filled cavity behind the nose, the nasopharynx, the air passageway at the upper part of the throat behind the nose, and the soft palate, at the back of the mouth just in front the nasopharynx. The illustration also highlights the extremities (arms and legs). A sagittal cross section of a female pelvis shows the uterus, bladder, and the vaginal orifice. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors . It describes the factors that may increase the chance of developing rhabdomyosarcoma. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board , 07/2022

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

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.

Rhabdomyosarcoma - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board , 07/2022

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

Children with rhabdomyosarcoma may or may not experience the following signs or symptoms (see the table below). Symptoms are changes that you can feel in your body. Signs are changes in something measured, like by taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem.

Some of the symptoms of rhabdomyosarcoma can be vague or may be similar to those caused by other common childhood illnesses. If you are concerned about any changes your child experiences, please talk with your child’s doctor.

Because rhabdomyosarcoma frequently occurs 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

Symptom

Nasal cavity

Nosebleed

Symptoms similar to a sinus infection

Ear

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

Vomiting

Constipation

Arm or leg muscle

Mass, growth, lump, 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 figure out the cause of the problem, called a diagnosis . This may include asking how long and how often your child has been experiencing the symptom(s).

If cancer is diagnosed, relieving symptoms and side effects remains an important part of cancer care and treatment. Managing symptoms may also be called "palliative care" or "supportive care." It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your child’s health care team about the 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. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board , 07/2022

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 many 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 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 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 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 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 uses magnetic fields, not x-rays, to produce detailed images of the body. 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 uses a radioactive tracer to look at the inside of the bones. 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 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. 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.

Rhabdomyosarcoma - Childhood - Stages and Groups

Approved by the Cancer.Net Editorial Board , 07/2022

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. Use the menu to see other pages.

What is cancer staging?

Doctors use a grouping and 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 recommend the best kind of treatment and can help predict a patient’s prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

This page provides detailed information about the system used to find the stage and clinical group of rhabdomyosarcoma, such as group II or group III.

  • TNM staging system

  • IRS clinical group

  • IRS-modified TNM stage

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 spread to other parts of the body? If so, where and how much?

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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 in the body 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, which is a tumor that has not spread outside of the area where it started and cannot be completely removed by surgery.

Group IV:
Describes a tumor that has distant metastases. A distant metastasis is cancer that has spread through the lymph system or blood to another part of the body.

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IRS-modified TNM stage

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

Stage 2:
Describes a small local tumor in any part of the body that is 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 the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis .

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

Information about the cancer’s stage and grouping will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board , 07/2022

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

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. 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 talks 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 particularly 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.

  • Surgery

  • Chemotherapy and risk groups

  • Radiation therapy

  • Physical, emotional, and social 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 a negative margin or no trace of cancer in the healthy tissue. 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 (Oncovin, Vincasar), dactinomycin (Cosmegen, Lyovac Cosmegen), and cyclophosphamide (Cytoxan, Clafen, Neosar). This combination of drugs is often called VAC.

Different studies are underway to continue determining 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).

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, the standard of care can be delivered and compared to new treatment combinations that may show potential promise in order to find out if the standard of care can be improved. In the United States, most research on childhood rhabdomyosarcoma takes place through the Children's Oncology Group (COG). Other individual hospitals may also offer studies that are independent of the COG. Learn more about current COG studies for rhabdomyosarcoma. Please note 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 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, long term effects are possible, including that 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 .

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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, and social 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 care or 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 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 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 similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.

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 care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

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 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 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," above) 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.

Rhabdomyosarcoma - Childhood - About Clinical Trials

Approved by the Cancer.Net Editorial Board , 07/2022

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

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. 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. Clinical trials may 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 are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work as well as the current standard of care. Parents are encouraged to talk with their child's health care team about the pros and cons of joining a specific study.

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 child's 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

People decide to participate in clinical trials for many reasons. For some, 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. Others volunteer for clinical trials because they know that these studies are a way to contribute to progress in treating rhabdomyosarcoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with rhabdomyosarcoma.

Insurance coverage of clinical trials differs by location and study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your child's insurance company first to learn if and how your child's treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” You and your child will always be told when a placebo is used in a study. 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 . Informed consent means that parents give permission for their child to participate in a clinical trial and that teenagers 18 or older give their consent to participate. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. Your child will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by outside experts who watch for any problems with each study. It is important that people 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 they choose 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 more 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, you can find a free video-based educational program about cancer clinical trials located in another section of this website.

The next section in this guide is Latest Research . It explains areas of scientific research for rhabdomyosarcoma. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board , 07/2022

ON THIS PAGE: You will read about the scientific research being done now 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. The current Children's Oncology Group (COG) study for intermediate-risk rhabdomyosarcoma is also investigating the duration of therapy by adding a maintenance period of low-dose chemotherapy following the initial course of treatment.

  • Higher-risk rhabdomyosarcoma. For children with higher-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 to standard VAC chemotherapy (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 at an overall lower dose of cyclophosphamide. Another COG study for high-risk rhabdomyosarcoma tested whether irinotecan, vincristine, and chemotherapy given every 2 weeks might improve outcomes. While there was some improvement for children younger than 10 years old with embryonal rhabdomyosarcoma, no significant improvement was seen from this study. The current COG study is investigating intensification of therapy and length of therapy for children with high-risk disease.

  • Palliative care/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. Kinase inhibitors are a type of cancer medication called targeted therapy. 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. 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 is ongoing to improve the understanding of rhabdomyosarcoma and how different drugs affect the disease. Investigations into the importance of gene translocations are very important and can help stratify patients between the various risk groups as well as by translocations that have improved diagnostic methods to better distinguish between the 2 major types of rhabdomyosarcoma. Additionally, ongoing studies are collecting and transplanting human rhabdomyosarcoma cells into animal models (called tumor xenografts) which safely permit testing of new investigational 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 their own diagnosis, as well as demographic, treatment, and outcome information so that 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.

  • 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.

Rhabdomyosarcoma - Childhood - Coping with Treatment

Approved by the Cancer.Net Editorial Board , 07/2022

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not 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 child’s health care team will work to prevent and relieve side effects. This part of cancer treatment is called palliative care or supportive care. It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.

Coping with physical side effects

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

It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful .

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called 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 after a cancer diagnosis. This may include dealing with a variety of emotions, such as anxiety, sadness, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

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 the costs of cancer care

Cancer treatment can be expensive. It can be 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. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health , such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities , people with fewer financial resources , sexual and gender minorities (LGBTQ+) , adolescent and young adult populations , older adults , and people who live in rural areas or other underserved communities .

If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people .

Talking with your child’s 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 likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should we call about side effects?

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

Caring for a child with cancer

Family members and friends often play an important role in taking care of a child 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

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish .

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child’s symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression , constipation , diarrhea , and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

The next section in this guide is Follow-Up Care . It explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Follow-Up Care

Approved by the Cancer.Net Editorial Board , 07/2022

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 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 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, 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 the child's physical growth and development, bladder problems, 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 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 .

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 them and with 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 their lifetime.

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.

Rhabdomyosarcoma - Childhood - Survivorship

Approved by the Cancer.Net Editorial Board , 07/2022

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

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 complicated parts of the cancer experience because it is different for every child and their 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 about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing 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 when new worries and challenges surface over time, such as any late effects of treatment, learning or school problems, 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

  • 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 the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Healthy living after cancer

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

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, limiting alcohol, 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 .

It is important that your child has recommended medical checkups and tests (see Follow-Up Care ) to take care of their health.

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

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.

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 information and resources to help survivors cope, including specific sections for children and teens and young adults . There is also a main section on survivorship for people of all ages.

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s cancer care team. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board , 07/2022

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, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage their care. 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 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 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?

  • Will my child receive this treatment at a hospital or clinic?

  • 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?

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

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

The next section in this guide is Additional Resources . It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Rhabdomyosarcoma - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board , 07/2022

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. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer 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.

Here are a few links to help you explore other parts of Cancer.Net:

  • Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology (ASCO).

  • Learn what medical phrases and terms used in cancer care and treatment mean.

  • Read more about the first steps to take when your child is diagnosed with cancer .

  • Find out more about clinical trials as a treatment option.

  • Get information about managing the financial costs of cancer care.

  • Learn more about coping with the emotions that cancer can bring, including those within a family or a relationship.

  • Find national, not-for-profit advocacy organizations about rhabdomyosarcoma and childhood cancers that may offer additional information, services, and support.

  • Explore what to do when your child finishes active treatment .

  • Download Cancer.Net Mobile , a free app that includes a symptom and side effect tracker, medication reminders, and other interactive resources.

  • To find a range of information and insights from different voices on timely cancer topics, visit the Cancer.Net Blog .

  • Watch Cancer.Net videos with ASCO experts explaining the basics of cancer treatment, side effects, survivorship, clinical trials, caregiving, and more.

This is the end of Cancer.Net’s Guide to Childhood Rhabdomyosarcoma. Use the menu to choose a different section to read in this guide.