The majority of children in the United States (over 95%) survive the cancer and have perfectly normal lives. All the children with unilateral retinoblastoma have one normal eye whose sight is not affected even though they may have had one eye removed. Children with one eye have normal vision, play sports, and later drive cars. It is, however, especially important for children with vision in only one eye to wear protective eyewear during sports and other hazardous activities. These children grow up and become famous actors, physicians, lawyers, nurses, accountants, and parents themselves.

The majority of children with bilateral retinoblastoma retain at least one eye with good vision and many are able to retain the use of both eyes. They also live normal lives, go to school, enjoy life, have careers and have families themselves. However, all children with bilateral disease and the 15% of unilateral patients who have the familial form of retinoblastoma will be at much higher risk for other cancers not involving the eyes throughout their lives. Five years after the initial diagnosis of retinoblastoma, more children with the genetic 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 1% 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 are very important when a child is diagnosed with retinoblastoma. All children should be followed by an ophthalmologist and by a pediatric oncologist. Frequency of examinations depends upon the age of the child, the ophthalmologist's suspicion of new tumors, the involvement of one or both eyes, and the type of treatment that the child has received. Mothers and fathers are encouraged to talk to the nurse and to call with questions between visits.

Many parents meet other parents in the waiting room of the phyisician's office, clinic, or hospital who also have children with retinoblastoma. Some have found it very helpful to talk to other parents who share similar concerns. Some institutions have newsletters or formal support groups for parents of children with retinoblastoma. Finally, some institutions have programs which can make a child's return to school, home, and the community a bit easier.

Retinoblastoma is a life-threatening disease, but it is rarely a fatal one if treated appropriately. With the correct treatment in the hands of an experienced ophthalmologist and appropriate follow-up both for eyes and for other cancers, the retinoblastoma patient has a very good chance of living a long, full, and happy life.


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