Five years after the initial diagnosis of retinoblastoma, more children with the inherited form of retinoblastoma have died from these second tumors than from the original retinoblastoma. The most common second tumors are osteogenic sarcoma (a cancerous tumor which affects the bones), soft tissue sarcomas, and cutaneous melanomas (tumors of the skin, muscle, and connective tissue).
Although the reported incidences of these tumors vary widely, the risk appears to be about one percent a year. This risk is also increased by the use of external beam radiation, although the amount of increase depends on the age at which the child was treated.
Follow-up appointments with an ophthalmologist and by a pediatric oncologist are very important when a child is diagnosed with retinoblastoma. Frequency of examinations depends upon the age of the child, the ophthalmologist's suspicion of new tumors, whether one or both eyes are involved, and the type of treatment that the child has received. Parents are encouraged to talk to the nurse and to call with questions between visits.
Long-Term Follow-Up Program
To meet the health care needs of childhood cancer survivors, Memorial Sloan-Kettering has developed a unique, multifaceted Long-Term Follow-Up Program, available to children and young adults who have been off treatment for approximately two years. The program offers services including initial follow-up consultations, treatment plans, screening and treatment for late effects, referrals and coordination of health care, and long-term health education.
