Rhabdomyosarcoma Patient & Family Handbook

WHAT ARE RHABDOMYOSARCOMA AND SOFT TISSUE SARCOMA? Rhabdomyosarcoma , also called rhabdo, is a cancer that develops from muscle cells (rhabdomyoblasts). It can arise from muscles in many different areas of the body, most commonly the head and neck, arms, legs, bladder, prostate gland, and vagina. Other, less common sites are the chest, abdomen, and genital and anal area. Rhabdomyosarcoma accounts for more than half of all soft tissue sarcomas diagnosed in children, making it the most common soft tissue tumor in children. The type of rhabdomyosarcoma is determined by looking at a piece of the tumor under the microscope. The most common types are embryonal and alveolar rhabdomyosarcoma. The term soft tissue sarcoma is generally used to refer to a cancer that arises from soft tissue other than muscle, such as connective tissue, fibrous tissue, blood vessels, nerves, and joint membrane tissue. Soft tissues connect, support, and surround other body parts and organs. Soft tissue sarcoma is rare in infants and children.

WHAT ARE SOME OF THE SIGNS AND SYMPTOMS OF RHABDOMYOSARCOMA AND SOFT TISSUE SARCOMA?

The signs and symptoms of rhabdomyosarcoma and soft tissue sarcoma depend on the location of the tumor and its effect on the surrounding organs and tissue. For example, if the tumor is located in the head or neck, there may be swelling around the eye ( proptosis ), facial nerve weakness, ear drainage, headache, facial pain, a lump in the neck, or signs of sinusitis. If the tumor is located in the arm or leg, there may be a tender or enlarged area in or around the muscle. Tumors in the bladder may cause bloody urine ( hematuria ) or difficulty urinating. Paratesticular tumors usually cause painless enlargement of the scrotum or groin area. Vaginal tumors may cause vaginal discharge or bleeding.

WHAT CAUSES RHABDOMYOSARCOMA AND SOFT TISSUE SARCOMA? At this time, it is not known what causes pediatric rhabdomyosarcoma and soft tissue sarcoma. We do know, however, that the tumors are not contagious and cannot be caught from another person. No behaviors or lifestyle habits, including those of the child’s mother during pregnancy, have been associated with the development of these tumors. The cancer is not caused by the presence or absence of something (such as vegetables or vitamins) in the child’s diet.

IS RHABDOMYOSARCOMA OR SOFT TISSUE SARCOMA INHERITED? Sometimes, but rarely, rhabdomyosarcoma is associated with a syndrome that has been passed down through a family (an inherited familial syndrome) such as Li-Fraumeni syndrome, neurofibromatosis type I, Beckwith- Wiedemann syndrome, cardiofaciocutaneous syndrome, and Costello syndrome. If a familial syndrome is a suspected cause of your child’s cancer, your child will be referred to a genetic specialist for further evaluation that may include bloodwork.

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