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When Your Child Has Ewing Sarcoma

Outline of child showing skeleton.
Ewing sarcoma usually forms in bone. Some common sites include the ribs, pelvis, and thigh bones.

Your child has been diagnosed with Ewing sarcoma. You likely feel shocked and scared. But you're not alone. Your child’s healthcare team will help you as you make important decisions about your child’s health and cancer treatment.

What is Ewing sarcoma?

Ewing sarcoma is a type of cancer that starts in bone or soft tissue, such as muscle. The cancer cells grow fast and a tumor can grow anywhere in the skeleton. The cancer can spread (metastasize) to another part of the body, such as the lungs or other bones.

Who gets Ewing sarcoma?

Children at any age can get Ewing sarcoma, but it's most often found in teenagers. It's rare in adults.

What causes Ewing sarcoma?

Ewing sarcoma happens because cells change and grow out of control. These cells then form a tumor. What causes the change (mutation) in the cells is not known.

What are the symptoms of Ewing sarcoma?

Some common symptoms of Ewing sarcoma include fever, pain, and a lump or swelling in the arms, legs, chest, pelvis, or back. Sometimes a bone breaks for no known reason.

How is Ewing sarcoma diagnosed?

Your child’s healthcare provider will examine your child. You'll be asked about your child’s health history. One or more of the following tests may be done:

  • Blood tests to measure certain substances and blood cell counts.

  • Imaging tests to take detailed pictures of the inside of your child's body. These may include an X-ray, MRI, CT scan, PET scan, or bone scan.

  • Bone marrow aspirations and biopsies to take out small bits of bone marrow from the hipbone and test them for cancer.

  • A biopsy to take a small piece (sample) of tissue from the tumor to test it for cancer.

Is it localized or metastatic?

When figuring out the best treatment plan and likely outcome (prognosis) for your child, the healthcare team looks at many things, including how far the cancer is thought to have spread.

Both treatment and prognosis depend on whether the tumor affects only one part of the body (localized) or has spread to more than one part of the body (metastatic). Your child’s healthcare provider can tell you more about how far your child's cancer is thought to have spread and what it means for your child.

How is Ewing sarcoma treated?

The goal of treatment is to take out or kill cancer cells. The kind of treatment your child gets depends on the size of the tumor, where it is, and whether the cancer is localized or metastatic. Your child may need one or more of these treatments:

  • Chemotherapy (“chemo”) destroys cancer cells with powerful cancer-fighting medicines. Multiple chemo medicines may be used. They're given through a tube (IV) that’s usually put into a vein in the arm or chest. Sometimes they can be given by mouth or as a shot (injection).

  • Surgery is done to take out all or part of the tumor.

  • Radiation therapy kills cancer cells and shrinks tumors using high-energy X-rays. Radiation may be used before or after other treatments.

  • High-dose chemotherapy and stem cell transplant may be needed if the cancer has concerning features or if other treatments don't work. This treatment is only available in clinical trials.

Supportive therapy

The goal of supportive therapy is to help protect the child from infection, prevent discomfort, and help keep blood counts within a healthy range. During your child’s treatment, antibiotics may be needed. These are drugs that help prevent and fight infection. Anti-nausea drugs, pain medicines, and other medicines may also be given. These help ease side effects caused by the cancer and cancer treatment. Your child may need a blood transfusion or medicines to restore blood cells destroyed by treatment.

What are the long-term concerns?

Your child may need physical therapy. This is to help get the body working after treatment. Also, chemotherapy and radiation may cause some problems. This can include damage to certain organs, changes in bone growth, fertility problems, and a higher than normal risk for cancer later in life. All this means that your child’s health will need to be monitored for life. This may include clinic visits, blood tests, imaging of the heart, and other scans and imaging tests.

Coping

Being told your child has cancer is scary and confusing. It’s important to remember that you're 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 learn more about this cancer and get support for yourself and the rest of your family. Doing so can help you all 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, too. Some helpful resources include:

  • Sarcoma Alliance www.sarcomaalliance.org

  • Sarcoma Foundation of America www.curesarcoma.org

Online Medical Reviewer: Adam Levy MD
Online Medical Reviewer: Kimberly Stump-Sutliff RN MSN AOCNS
Online Medical Reviewer: Lu Cunningham RN BSN
Date Last Reviewed: 6/1/2019
© 2000-2019 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.
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