Rhabdomyosarcoma Patient & Family Handbook

WHO GETS RHABDOMYOSARCOMA OR SOFT TISSUE SARCOMA? Rhabdomyosarcoma accounts for approximately 4% of all childhood cancers diagnosed before the age of 15 years. Approximately 350 cases of rhabdomyosarcoma are diagnosed each year in the United States. The majority of children are younger than 9 years of age at the time of diagnosis. Tumors of the bladder and vagina occur more often in infants and young children; tumors of the trunk, arms, and legs are more likely to affect older children and adolescents. Rhabdomyosarcoma is slightly more common in boys than girls. Soft tissue sarcoma is rare in children, accounting for 3% of all childhood cancers, but it can occur at any age. It may be associated with other hereditary conditions or with radiation exposure. WHAT TESTS AND PROCEDURES WILL MY CHILD NEED? A number of tests and procedures may be used to diagnose rhabdomyosarcoma or soft tissue sarcoma and to determine the extent of your child’s disease. TUMOR BIOPSY A tumor biopsy is the removal of a small amount of tissue to be looked at under a microscope. This test is needed to confirm the diagnosis and decide what the best treatment is. The biopsy most often is performed by a surgeon who removes an enlarged lymph node or a small part of a tumor. In some medical centers, the biopsy is done in the radiology department, where a needle is guided into the lymph node or tumor to obtain the biopsy sample ( fine needle aspiration biopsy ).In other cases, a surgical incision is made. Patients are often sedated for biopsies; your child’s comfort and anxiety level will always be considered in planning this procedure. CYTOGENETIC TESTING Cytogenetic testing may be another important part of the diagnostic process. Your healthcare team may ask your permission to perform cytogenetic testing on the tumor sample collected during biopsy. Cytogenetic testing includes evaluation of the genes or chromosomes that make up a tumor cell to seek out specific genetic abnormalities, including PAX3-FOXO1 and PAX7-FOXO1 gene fusions, to help determine the most effective treatment decisions and identify whether there are specific medications to target the tumor. Research is ongoing to improve rhabdomyosarcoma classification through molecular testing. BONE MARROW ASPIRATION AND BIOPSY A bone marrow aspirate and biopsy is a procedure done to remove a small sample of bone marrow, which is the factory that makes our blood cells. This test is done to determine if any cancer cells have spread to the bone marrow. A needle is inserted into the marrow inside the bone. Some of the bone marrow (the biopsy) and the fluid in the bone marrow (the aspirate) are collected. It is usually necessary to obtain bone marrow samples from both hip bones. Patients undergoing bone marrow aspirations and biopsies may experience pain, so children often are sedated for this procedure. If your child is uncomfortable after the test, a mild pain medication such as acetaminophen (Tylenol®) may be given.

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