Ewing Sarcoma Patient & Family Handbook

WHO GETS EWING SARCOMA? Approximately 200–250 children in the United States are diagnosed with Ewing sarcoma each year. Ewing sarcoma is found mostly in adolescents 10–20 years of age. This group accounts for a little more than 1% of all childhood cancers. About 30% of all Ewing sarcomas occur in adults over the age of 20. Most patients are white, and males are affected more often than females. Ewing sarcoma is extremely rare among those of Asian or African descent. IS EWING SARCOMA INHERITED? We have no evidence that Ewing sarcoma is genetic or inherited from a family member. It is rare for more than one person in a family to have this type of tumor. WHAT IS METASTASIS? Metastasis refers to the spread of a tumor from its original location, or the primary site, to other parts of the body. Metastases are found in approximately 30% of patients with Ewing sarcoma at the time of their diagnosis. Half of the metastases are usually found in the lungs, and half are in other places—often other bones. Metastasis in the bone marrow (inside of the bones where blood cells are made) is less common. Some signs and symptoms of metastases include fever, pain, weight loss, and fatigue. WHAT IS STAGING? Staging is the process of determining the location and amount of the cancer at the time of diagnosis. Staging for Ewing sarcoma is based on the location of the tumor and whether it has spread. A tumor is staged as either localized or metastatic. A localized tumor is one that has not spread to another part of the body; a metastatic tumor is one that has spread. The method of treatment proposed for your child will depend on the stage of the disease at the time of diagnosis.

WHAT TESTS AND PROCEDURES WILL MY CHILD NEED? To diagnose Ewing sarcoma and determine the extent of your child’s disease, a number of tests and procedures are needed. A member of your child’s healthcare team will take a complete history of the illness, which includes a determination of the location, duration, and intensity of any pain. A physical examination will be performed to check for a limp, a limited range of motion in the joints, or any soft-tissue masses or lumps. In addition, blood tests and radiographic imaging studies will be needed as described below. X RAY

An X ray is a simple procedure that uses low levels of radiation to create pictures of the tissues, organs, and bones inside the body. Standard X rays, which might be called plain films , are taken of areas that might be affected by your child’s condition. Children have to be still for a moment to have X rays taken, but X rays don’t cause pain. To minimize exposure to radiation, a special gown or vest will shield parts of your child’s body that aren’t being imaged, and you may be asked to step out of the room or wear similar protection when the X ray is taken.

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