Ewing sarcoma

The first step in treating your child's Ewing sarcoma is forming an accurate and complete diagnosis.

How is Ewing sarcoma usually diagnosed?

Often, the symptoms of Ewing sarcoma are non-specific. For example, a pain in your child’s arm or a lump on her leg may be caused by any number of conditions … not necessarily Ewing.

But if your child’s symptoms are persistent, you should always see her primary care provider right away. A thorough physical exam and X-rays will usually reveal a tumor if one is present.

Next, your child will be referred to a pediatric cancer specialist to confirm a diagnosis of Ewing sarcoma through one or more of the following procedures:

• magnetic resonance imaging (MRI) — used to get detailed images of organs and structures within the body
• computerized tomography (CT) scan — provides more detailed images than x-rays
• positron emission tomography (PET) scan — commonly used to detect cancers and help doctors see how the organs and tissues inside the body are actually functioning
• biopsy — In some cases, taking a tissue sample of the tumor helps your child’s doctor determine the tumor type.
• bone scan — used to detect bone diseases and tumors, as well as to determine the cause of bone pain or inflammation.

Less often, Ewing sarcoma is diagnosed through:

• genetic testing — This test can sometimes help confirm a diagnosis of Ewing sarcoma. Doctors take a biopsy of your child’s tumor and run tests to look for translocations, which occur when part of one chromosome breaks off and attaches to another chromosome. A translocation between chromosomes 11 and 22 usually confirms the diagnosis of Ewing sarcoma and allows doctors to rule out other types of cancer.
• bone marrow aspiration — This procedure involves taking a small amount of bone marrow fluid and tissue (usually from part of the hip bones) to further examine the number, size and maturity of blood cells and/or abnormal cells.

After we complete all necessary tests, our experts will meet as a team to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.

What does “staging” mean and how is Ewing sarcoma staged?

Once Ewing sarcoma has been diagnosed, the tumor is staged. This is a process that indicates whether the cancer has spread and, if so, how far.

The system used for staging Ewing sarcoma is simpler than the one used for a lot of other cancers. Ewing sarcoma is classified as either localized or metastatic.

• Localized means the tumor has not spread beyond the bone where it began, or beyond the closest surrounding tissues.
• Metastatic means the tumor has spread to the lungs, to bones other than the bone where it first started growing or to other organs or structures in the child’s body.

The stage, which is determined based on the results of imaging tests and biopsies of the tumor, helps your doctors decide on treatment options and prognosis.

Your child’s prognosis is an indication of what the likely course of the disease is, and the chances that treatment will be effective. It's often stated in terms of a five-year survival rate. For patients with localized Ewing tumors, the five-year survival rate is close to 70 to 80 percent. For metastatic tumors, the five-year survival rate is 20 to 30 percent.