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When Your Child Has Rhabdomyosarcoma

Your child has been diagnosed with rhabdomyosarcoma (RMS). You are likely feeling shocked and scared. But, you are not alone. Support and treatment are available. Your child’s healthcare team will help you as you make important decisions about your child’s health.

What is RMS?

RMS is a type of cancer that starts in cells that become muscle. It can start in any skeletal muscle. These are the muscles that move to control different parts of the body. The cancer cells are fast growing and can group together to form a tumor. The cancer cells can also break off and spread (metastasize) to another part of the body.

RMS is more common in children than in adults.

Types of RMS

There are two main types of RMS in children:

  • Embryonal. With this type, a tumor most often forms in the face, head, neck, vagina in females, or the prostate gland (gland that produces semen) or testicles in males. The bladder and other urinary organs may also be affected.

  • Alveolar. This type is more likely to cause a tumor to develop in the arm, leg, or stomach.

Your child’s healthcare provider will discuss with you the type of RMS your child has and what that means for treatment and likelihood of cure.

Who gets RMS?

Embryonal RMS tends to be more common in children younger than 5 years of age. But, children at any age can get either type of  RMS. This cancer is not contagious. This means your child can’t pass it to another person. 

When adults develop RMS, it tends to be very fast growing and hard to treat.

What causes RMS?

With RMS, cells grow abnormally. What causes this to happen is not fully known.

In most cases, the cause of RMS isn't know. However, certain diseases and birth defects have been shown to increase a child’s risk of this cancer. Your child’s healthcare provider may be able to tell you more.

What are the symptoms of RMS?

Symptoms depend on where the tumor starts. Some common symptoms of RMS include:

  • Pain from a tumor pushing on nerves or other nearby body parts

  • A lump or swelling in the head, neck, arms, legs, and stomach that gets larger and doesn’t go away

  • Bulging eye

  • Headache

  • Ear pain

  • Problems passing urine or stool

  • Unusual bleeding, such as from the ear, nose, throat, vagina, or rectum

Your child may have some of these symptoms, or other symptoms.

How is RMS diagnosed?

Your child’s healthcare provider examines your child. You will be asked about your child’s health history. Your child may also have one or more of the following:

  • Imaging tests to take detailed images of areas inside the body. These may include X-ray, magnetic resonance imaging (MRI), computed tomography (CT) scan, PET scan, bone scan, or ultrasound. These can show exactly where the tumor is and how big it is. They can also be used to look for signs that the cancer has spread.

  • Bone marrow aspirations and biopsies to take samples of bone marrow from the hipbones. These samples are examined under a microscope. Since RMS can spread to the bone marrow, this test is the only way to check for this.

  • Lumbar puncture, also called spinal tap, to take a sample of the fluid that surrounds the spinal cord from the child’s lower back. This test isn't always needed, but may be used if the tumor is in the head, near the brain.

  • A biopsy to take a small piece or sample of tissue from a tumor to examine under a microscope. A biopsy is the only way to know for sure that a tumor is RMS. It can also tell the type of RMS.

Staging and grading of RMS

Staging is the process that tells the size of the cancer and how much it has spread. Most cancers have their own staging system. Grading is used to describe how abnormal the cancer cells look when seen through a microscope. The more abnormal the cells are, the faster they grow. Staging and grading help the healthcare team plan treatment for your child. They also help determine the prognosis.

The process used for RMS takes into consideration the following:

  • Location of the primary tumor

  • Tumor size

  • How much of the tumor is removed with surgery

  • If the cancer has spread to other areas of the body

  • The specific sub-type of RMS

The stages are written as Roman numerals and can have a value of I through IV or 1 through 4. The different stage numbers refer to the tumor’s size and if it has spread. For instance, stage I is a very early stage of cancer—the tumor is small and hasn't spread beyond where it first started.  Stage IV means the cancer is widespread. RMS has different sub-types. Your healthcare provider can tell you more if needed. Be sure to ask your healthcare provider if you have any questions about the stage of your child’s cancer.

How is RMS treated?

The goal of treatment is to remove or destroy the cancer cells. The kind of treatment depends on the type and stage of tumor your child has. Your child may need one or more of these treatments:

  • Surgery to remove all or part of a tumor.

  • Chemotherapy (“chemo”) to destroy cancer cells with powerful cancer-fighting medicines. Your child may get a combination of medicines. They are given through a small tube called an IV (intravenous) that’s usually put into a vein in the arm or chest. Or, they may be given by mouth or injection.

  • Radiation therapy to destroy cancer cells and shrink a tumor using strong X-rays. Radiation may be used before or after other treatments.

Because RMS isn't common, it's been hard to study what the best treatment is for each child. Most experts agree that treatment in a clinical trial should be considered for any type of childhood cancer. This way children can get the best treatments available now and may also get the treatments that are thought to be even better.

Experts also agree that children with RMS should be treated in a major cancer center by healthcare providers who have experience and expertise in treating RMS.

Supportive treatments

Supportive treatments help protect the child from infection, prevent discomfort, and bring the body’s blood counts back to a healthy range. These treatments don't treat the cancer itself, but help with symptoms and side effects the cancer is causing.

During your child’s treatment, he or she may be given antibiotics. These are medicines that help prevent and fight infection. Other medicines may also be given. These help ease side effects caused by treatment, such as nausea. Your child may also receive a blood transfusion to restore the healthy blood cells that can't grow because of the effects of treatment. For the blood transfusion, blood is taken from a donor and stored until the child is ready to receive it.

Talk with your child's healthcare provider about any problems your child is having, so they can be controlled or even prevented.

What are the long-term concerns?

Your child may need physical therapy. This is to get the body functioning normally after treatment. Also, chemotherapy and radiation may cause some problems, such as damage to certain organs. So your child’s health will need to be watched closely for life. This may include clinic visits, blood tests, and imaging tests.

Talk to your child's healthcare provider about long-term treatment side effects, too. These can include changes in your child's mood, thinking, and ability to learn, as well as the possibility of fertility problems and other cancers in the future.

Coping

Getting a cancer diagnosis for your child is scary and confusing. Remember that you are not alone. Your child’s healthcare team will work with you and your child throughout your child’s illness and care. You may also want to seek information and support for yourself. Learning about your child's cancer and talking with others who also have a child with cancer may help you and your family cope with the changes cancer brings. Some helpful resources include:

  • Sarcoma Alliance
    www.sarcomaalliance.com

  • Sarcoma Foundation of America
    www.curesarcoma.org

  • Children's Oncology Group
    www.childrensoncologygroup.org

© 2000-2018 The StayWell Company, LLC. 800 Township Line Road, Yardley, PA 19067. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions.