Because more children with rhabdomyosarcoma are now surviving longer, it has become possible to look at the long-term effects of their treatment. It's important to discuss what these potential effects might be with your child's medical team before starting treatment.
The possible long-term effects of surgery depend a great deal on the location and extent of the tumor(s). Some operations may result in few physical changes other than a scar, while more involved operations may lead to changes in appearance or may require physical rehabilitation.
Some chemotherapy drugs may damage cells in the ovaries and testicles that can make it difficult or even impossible for patients to have children.
Another unwanted long-term result is the small, but definitely increased, risk of second cancers in survivors who received chemotherapy and radiotherapy. These cancers include bone cancer, leukemia, or other soft tissue tumors. The bone cancers seem to be linked with radiotherapy, while the leukemias are more often seen after treatment with cyclophosphamide and related drugs.
It is important to remember that these second cancers affect only a small number of rhabdomyosarcoma survivors, and these are children who most likely would not have survived the rhabdomyosarcoma without these treatments.
The long-term side effects of radiation therapy may be significant, especially for young children. Bones and soft tissues that are irradiated do not grow very well. Depending on the area getting radiation, this may result in curvature of the spine, a shortened limb, limited motion of a joint, hardening of the surrounding soft tissue, stiffening of the lungs, poor development of the facial bones, cataracts and poor vision of the involved eye, later problems with sexual function, and other problems. Doctors try to limit these potential side effects as much as possible when planning treatment.
Long-term follow-up care for children
To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children's Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines, written for doctors and other health care professionals, describe in detail the suggested long-term follow-up care based on the treatments the child has received. It is very important to discuss possible long-term complications with your child's health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child's doctors about the COG survivor guidelines, and see our document, Childhood Cancer: Late Effects of Cancer Treatment.
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