Rhabdomyosarcoma Patient & Family Handbook

STAGE OF RHABDOSARCOMA

CLINICAL GROUP

RISK GROUP

Stage I: The tumor is located in a “favorable” site such as the eye, head, neck, biliary tract or liver, or near the sex organs or bladder (not including the bladder or prostate) and may have spread to lymph nodes near the tumor but has not spread to other areas of the body. Stage II: The tumor is located in only one area (a location not included in Stage I), is smaller than 2 inches (5 centimeters) across, and may have spread to lymph nodes near the tumor but not to other areas of the body. Stage III: The tumor is located in only one area (a location not included in Stage I), is larger than 2 inches (5 centimeters) across, and may have spread to lymph nodes near the tumor but not to other areas of the body. Stage IV: The cancer has spread from the primary site and is found in more than one other place in the body at the time of diagnosis.

Clinical Group I: The tumor is confined to one area and has been completely removed with surgery; no lymph nodes were involved. Clinical Group II: The tumor and lymph nodes involved have been removed; there may be a very small amount of disease only seen with a microscope (microscopic disease) left after surgery. Clinical Group III: The tumor was only partially removed. Clinical Group IV: The cancer has spread from the primary site and is found in more than one other place in the body at the time of diagnosis.

Low Medium High Risk group assignment is determined by a combination of your child’s rhabdomyosarcoma stage, clinical group, and cytogenetic testing results.

HOW ARE RHABDOMYOSARCOMA AND SOFT TISSUE SARCOMA TREATED? Three types of treatment are commonly used to treat rhabdomyosarcoma and soft tissue sarcoma: surgery, chemotherapy, and radiation. The type chosen depends upon the type of tumor and the extent of the disease. Often, a combination of all three treatments is used, especially for rhabdomyosarcoma. The order of treatments depends on the disease’s signs and symptoms in your child. Surgery and radiation may be part of the initial therapy or may be delayed so that chemotherapy can shrink the tumor. Your child’s doctor will talk with you about the best treatment for your child, and decisions about treatment will be made by your family and the doctor. SURGERY Generally, the goal of surgery is to remove the entire tumor; this is called a total resection. Removing as much of the tumor as possible often can be done at the time of diagnosis. For some soft tissue sarcomas, surgery may be the only treatment required. Chemotherapy or radiation treatments may be given first to shrink very large tumors or tumors where surgical resection is not recommended due to potential impairment of body function or body image. Shrinking the tumor first can minimize the risk of surgical injury. A “second-look” surgery may be done after your child has undergone some treatment. This type of surgery can determine your child’s response to the treatment received so far and help the healthcare team plan any additional therapy.

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