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Retinoblastoma

Retinoblastoma is a cancer of the eye that develops mainly in small children. This disease begins in the cells of the retina (the light-sensitive layer of tissue at the back of the eye). Fortunately, modern treatment means that we can cure more than 90 percent of children who have retinoblastoma.

Retinoblastoma is rare, affecting 200 to 300 children per year in the United States. The average age of a child diagnosed with retinoblastoma is 18 months, and 95 percent of children who have the disease are under age five.

Symptoms of retinoblastoma include:

  • Whitish color behind the pupil, especially in direct light, such as a camera flash
  • Strabismus (crossed eyes)
  • Redness of the eye
  • Swelling of the eye

Retinoblastoma can develop in one or both eyes. Most retinoblastoma occurs because of a random gene mutation. However, a few cases are the result of a gene mutation inherited from a parent.

The chance of an excellent outcome is highest when we diagnose and treat retinoblastoma early. Fortunately, physicians in the U.S. find most retinoblastomas before they spread beyond the eye.

Retinoblastoma is one of the most curable childhood cancers. We provide patient- and family-centered care for the whole person, not just the disease. Our goal is to help your child beat retinoblastoma, maintain good eyesight and have a healthy and fulfilling life. We develop a comprehensive treatment plan to fit the specific needs and preferences of each child and family.

Retinoblastoma is a rare condition that requires highly specialized care. At Indiana University Health, our physicians have the experience and skill to help your child achieve the best possible results. We have access to the most current research and advanced equipment to assist us in diagnosing and treating your child.

Genetic testing is important when a child has retinoblastoma. The results can help us determine whether your child has a chance of developing tumors in the other eye or elsewhere in the body after treatment. We can also determine whether other family members may be at risk for getting retinoblastoma. When we know that a child is at risk for this condition, we can perform regular exams to catch it early.  

At the Eugene and Marilyn Glick Eye Institute, which is part of the Indiana University School of Medicine, experts are conducting research on better ways to diagnose and treat retinoblastoma and many other conditions.

How We Can Help

How We Can Help

Retinoblastoma Treatment Information

The right treatment for your child depends on the stage of the retinoblastoma and many other factors. Your multidisciplinary healthcare team may include ophthalmologists, oncologists, specialized nurses and other professionals.

Treatment options include:


Retinoblastoma Locations & Physicians

Use the search options below to find treatments available in your area. 

Find a Specialist

Enter a Zip Code to find a specialist at IU Health.


Retinoblastoma Support Services

Learning as much as possible about retinoblastoma makes you a more effective partner in your child’s care. These websites provide information and resources: