Survival Rates and Prognostic Factors for Retinoblastoma

If a child is diagnosed with retinoblastoma, doctors will do tests to figure out if it has spread, and if so, how far. This process is called staging. The stage of the retinoblastoma describes how big a tumor is and where the cancer is in the body.

Retinoblastoma is staged based on the results of eye exams, imaging tests, and any other tests that were done, which are described in Tests for Retinoblastoma.

Prognostic factors

In children with cancer, certain factors that can affect a child’s outlook (prognosis) are called prognostic factors. They help doctors anticipate how a child’s cancer may respond to treatment and decide how intense treatment should be.

For retinoblastoma, whether retinoblastoma has spread outside the eye (metastatic disease) is the most significant factor affecting outlook. Metastatic disease is much more common for children living outside the United States and has a poor outlook.

For intraocular disease, prognostic factors are often discussed in terms of being able to save the affected eye or preserve vision, as most children can be cured of their disease. Prognosis for vision is better in children with:

• Unilateral disease (affecting only one eye)
• Smaller tumors away from the center of the retina in at least one eye when bilateral disease is present (affecting both eyes)

For more information on treatment of retinoblastoma, and ways doctors can try to preserve vision and/or the eyes, see Treating Retinoblastoma.

Survival rates

The 5-year survival rate refers to the percentage of children who live at least 5 years after their retinoblastoma is diagnosed.

In the United States, most cases of retinoblastoma are intraocular and can be treated and cured. 5-year survival rates for retinoblastoma exceed 95%.

Retinoblastoma that has spread outside the eye, especially those that have spread to the brain or cerebrospinal fluid (CSF), remains difficult to treat.

Retinoblastoma that has spread outside the eye to places other than the brain or CSF has survival rates that range from 60–90%, depending on the extent of spread. Even with intense treatment, survival of children with spread of retinoblastoma to the brain or CSF is much lower, less than 20%.

While these risk groups provide an estimate of how well treatment may work, your doctor knows your child’s case the best. Talk with your treatment team about how these numbers may apply in your child’s situation.