What is the outlook for people with retinoblastoma?

With treatment, children who have retinoblastoma that has not spread to other parts of the body have a 96.5% survival rate at 5 years. Cancer specialists measure cancer outlook by the five-year survival rate. For kids with more advanced retinoblastoma, the outlook varies. The prognosis depends on whether the cancer has spread to the brain and spinal cord.

Children with heritable retinoblastoma have a higher risk of developing another type of cancer later in life. Later cancer is most often cancer of the bones (osteosarcoma). If cancer develops after retinoblastoma, it usually appears within 30 years after treatment.

What do I need to know about follow-up care after retinoblastoma treatment?

Follow-up care is essential after your child has finished treatment for retinoblastoma. Through regular checkups, your child’s provider can check if cancer has returned. They can also detect new tumors and monitor your child for side effects of treatment.

Children who had surgery to remove an eye will receive a prosthetic (fake) eye, which is almost like a big contact lens. A prosthetic eye looks natural. It isn’t painful to wear, but it may take some time for your child to get used to it. Your child’s provider will teach you and your child how to care for the prosthetic eye. You’ll have regular visits to make sure it fits properly.

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