What is the Retinoblastoma Follow-Up Study?

Are you one of our survivors? Let us know!

Retinoblastoma is a cancer of the eye. Typically retinoblastoma is diagnosed in infancy and early childhood. For the past 30 years, scientists at the National Cancer Institute (NCI) have been studying retinoblastoma and its long-term health effects on survivors—people who were treated for it as children and who are now adults. Fortunately, treatment of retinoblastoma has a very high success rate and survivors enjoy long productive lives.

What is the goal of the study?

The goal of this study is to learn about second cancers that retinoblastoma survivors may face as they grow older.

What does this study mean for me?

We found an important difference between survivors who had retinoblastoma in one eye (sporadic, non-hereditary) and survivors who had retinoblastoma in both eyes (hereditary). Our research has found an increased risk for bone cancer, soft tissue sarcoma and melanoma in hereditary retinoblastoma survivors. Survivors with sporadic disease were not at increased risk for second cancers.

To learn how to reduce your risk of second cancers, read our Cancer Prevention page.

The Retinoblastoma Follow-up Study is an epidemiology study. All epidemiologic studies at NCI are carried out by the Division of Cancer Epidemiology and Genetics. To find out more about our work, please visit: https://dceg.cancer.gov/