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 soft tissue sarcoma. This type of cancer starts in cells that become muscle. 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, teens, and young adults.
Types of RMS
There are 2 main types of RMS in children:
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Embryonal. This is the most common type of RMS. With this type, a tumor most often forms in the head, neck, vagina, the prostate gland (gland that produces semen), or testicles. The bladder and other urinary organs may also be affected.
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Alveolar. This type is more likely to cause a tumor to develop in the large muscles of the arm, leg, or trunk of the body. It tends to grow faster than the embryonal type.
Your child’s healthcare provider will discuss with you the type of RMS your child has. They will talk about 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 old. But children at any age can get either type of RMS. No cancer is contagious. This means your child can’t pass it to another person.
When adults get RMS, it is often very fast growing and hard to treat.
What causes RMS?
With RMS, cells grow abnormally. Experts don't know what causes this to happen.
In most cases, the cause of RMS isn't known. But certain rare inherited conditions have been shown to increase a child’s risk of having 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:
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Pain from a tumor pushing on nerves or other nearby body parts
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A lump or swelling in the head, neck, arms, legs, stomach, vagina, and testicles that gets larger and doesn’t go away
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Bulging eye
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Headache
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Ear pain
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Problems passing pee or poop
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Abnormal bleeding, such as from the ear, nose, throat, bladder, 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 1 or more of these tests:
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Imaging tests. These tests take detailed images of areas inside the body. These may include X-ray, MRI, 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.
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Bone marrow aspirations and biopsies. These take small tissue samples of bone marrow from the hipbones. These samples are sent to a lab and checked under a microscope. RMS can spread to the bone marrow. So this test is the only way to check for this.
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Lumbar puncture (called spinal tap). This test takes a sample of the fluid that surrounds the spinal cord from the child’s low back. This test isn't always needed. But it may be used if the tumor is in the head, near the brain.
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Abiopsy. This takes a small tissue sample from a tumor. The sample is sent to a lab to be checked 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 understand your child's risk to plan treatment for your child. They also help determine the likely outcome (prognosis).
The process used for RMS looks at the following:
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Where the primary tumor is
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How big the tumor is
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How much of the tumor is removed with surgery
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If the cancer has spread to other areas of the body
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What specific subtype of RMS your child has
The stages are written as Roman numerals and can have a value of I through IV (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 has spread to other body parts. RMS has different subtypes. Your child's healthcare provider can tell you more if needed. Be sure to ask the 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 1 or more of these treatments:
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Surgery. This removes all or part of a tumor and some surrounding tissue.
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Chemotherapy (chemo). This destroys 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) line. This is usually put into a vein in the arm. Or a catheter is placed in a large vein in the chest. Certain types of chemo may be given by mouth or shot (injection).
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Radiation therapy. This destroys cancer cells and shrinks a tumor using strong X-rays. Radiation may be used before or after other treatments.
RMS isn't common. So 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. They may also get 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 a 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 they help with symptoms and side effects that the cancer and its treatment are causing.
During your child’s treatment, they 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, vomiting, and diarrhea. Your child may also have a blood transfusion. This is 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 help get the body functioning normally after treatment. Also, chemo and radiation may cause some problems. These can include damage to certain organs. So your child’s health will need to be watched closely for life. This may include regular healthcare provider visits, blood tests, and imaging tests.
Talk to your child's provider about long-term treatment side effects, too. These can include changes in your child's mood, thinking, and ability to learn. It also includes possible 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 get 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: