Retinoblastoma is a rare cancer of the retina, located at the back of the eye. It is highly treatable, and in most cases, one or both eyes can be saved. Prompt, effective care is critical. Our team at Miami Cancer Institute is experienced in its diagnosis and its treatment and committed to preserving your child’s quality of life. We also offer support services for you and your family to help you understand and cope with your child’s condition.

Our pediatric cancer team is experienced in treating children with rare diseases, including retinoblastoma. As Florida’s only member of the Memorial Sloan Kettering Alliance, we can draw on the resources of the alliance to ensure complete, appropriate treatment and support. We also work with Nicklaus Children’s Hospital and other local partners to provide all the services and support your child might need.

What is retinoblastoma?

Retinoblastoma is cancer of the retina, which receives light and converts it into a signal that goes to the brain to make vision possible. This cancer results from a mutation of a suppressor gene. About 40 percent of cases are inherited. Children with hereditary retinoblastoma usually have tumors in both eyes, while nonhereditary cases usually affect just one eye. Retinoblastoma is usually diagnosed before a child reaches 3 years of age. Only about 250 to 300 children in the United States are diagnosed each year. Nearly all children with the disease can fully recover if diagnosed early enough.

What are the types of retinoblastoma?

Unilateral retinoblastoma affects one eye and is the most common type.

Bilateral retinoblastoma affects both eyes. It is almost always hereditary and is usually diagnosed in the first year of life.

PNET (primitive neuroectodermal tumors) retinoblastoma occurs when an associated tumor forms in primitive nerve cells in the brain. It is very rare and only occurs in hereditary retinoblastoma. It also is known as trilateral retinoblastoma.

What are the risk factors for retinoblastoma?

Very few risk factors have been identified for retinoblastoma. The mutation that causes it can be inherited, but most cases are not hereditary. Children with a parent who had retinoblastoma are at an increased risk.

What can you do to prevent retinoblastoma?

Because most known risk factors are not preventable, there are no recommended preventive measures. Some children with risk factors may benefit from genetic testing to determine specific risk.

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