When Your Child Has Rhabdomyosarcoma
Your child has been diagnosed with rhabdomyosarcoma (RMS). You are likely feeling shocked and scared. You are not alone. Support and treatment are available. Your child’s healthcare team will help you as you make important decisions regarding your child’s health.
What is RMS?
RMS is a type of cancer that often forms in soft tissue, such as muscle. The cancer cells are fast-growing and can group together to form a tumor. The cancer cells can break off and spread (metastasize) to another part of the body.
Types of RMS
There are two main types of RMS that happen in children:
Embryonal. With this type, a tumor most often forms in the face, head, neck, vagina in females, or the prostate (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 (prognosis).
Who gets RMS?
Children at any age can get RMS. This cancer is not contagious, meaning your child can’t pass it to another person.
What causes RMS?
RMS happens because cells grow abnormally (mutate). What causes this to happen is not fully known. However, certain syndromes 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?
Some common symptoms of RMS include pain or a lump or swelling in the head, neck, arms, legs, and stomach that gets larger and doesn’t go away. Your child may have experienced 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, MRI, CT scan, PET scan, bone scan, or ultrasound.
Bone marrow aspirations and biopsies to take samples of bone marrow from the hipbones and examine them under a microscope
Lumbar puncture, also called spinal tap, to take a sample of the fluid that surrounds the spinal cord from the child’s lower back
A biopsy to take a small sample of tissue from a tumor to examine under a microscope
Staging and grading of RMS
Staging is the process that determines 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
How much of the tumor is removed with surgery
If the cancer has spread to other areas of the body
How abnormal the cancer cells look under a microscope
The cancer is also broken down into stages 1 through 4 (often written as I through IV). 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. Stage IV means the cancer is widespread. RMS is also broken down into further classifications. 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 cancer cells. The kind of treatment your child receives depends on the type and stage of tumor your child has. Your child may require 1 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. Multiple chemo medicines may be used. They are given through a tube (IV) 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 high-energy X-rays. Radiation may be used before or after other treatments.
The goal of supportive treatments is to protect the child from infection, prevent discomfort, and bring the body’s blood counts to a healthy range. During your child’s treatment, he or she may be given antibiotics. These are medicines that help prevent and fight infection. Antinausea and other medicines may also be given. These help ease side effects caused by treatment. Your child may receive a blood transfusion to restore the blood cells destroyed by treatment. Blood is taken from a donor and stored until the child is ready to receive it.
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 monitored for life. This may include clinic visits, blood tests, imaging tests, and ultrasounds of the heart.
Receiving a cancer diagnosis for your child is scary and confusing. It’s important to 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 wish to seek information and support for yourself. Doing so can help you cope with the changes cancer brings. Learning about and talking with others who also have a child with cancer may help you and your family cope. Some helpful resources include:
Sarcoma Foundation of America
Children's Oncology Group