Prognosis and survival for retinoblastoma

You may have questions about your child’s prognosis for retinoblastoma. A prognosis is the doctor’s best estimate of how cancer will affect someone and how it will respond to treatment. Prognosis and survival depend on many factors. Only a doctor familiar with a child’s medical history, the type and stage and other features of the cancer, the treatments chosen and the response to treatment can put all of this information together with survival statistics to arrive at a prognosis.

A prognostic factor is an aspect of the cancer or a characteristic of the child that the doctor will consider when making a prognosis. A predictive factor influences how a cancer will respond to a certain treatment. Prognostic and predictive factors are often discussed together. They both play a part in deciding on a treatment plan and a prognosis.

The following are prognostic and predictive factors for retinoblastoma.


Doctors use the stage of retinoblastoma to choose treatment and predict the outlook for a child. There are 3 staging systems that might be used for retinoblastoma.

The International Classification for Intraocular Retinoblastoma uses groupings to help predict the likelihood that the eye can be saved with current treatment options. Children in group A have the most favourable prognosis and are most likely to be able to see after treatment.

The Reese-Ellsworth staging system also uses groupings to help predict whether the child will be able to see after treatment. Children in group 1 (the very favourable stage) are most likely to be able to see after treatment.

The TNM staging system is based on tumour size and spread. The lower the stage of retinoblastoma, the better the expected outcome.

Whether the tumour has spread

Children with retinoblastoma that has not spread outside the eye (intraocular retinoblastoma) have a better prognosis than children with retinoblastoma that has spread outside the eye (extraocular retinoblastoma) or to other parts of the body (metastatic retinoblastoma). Children with retinoblastoma that has spread to the brain and spinal cord (called the central nervous system, or CNS) often have a poorer prognosis.

Trilateral retinoblastoma

Trilateral retinoblastoma is when pineoblastoma develops along with retinoblastoma in both eyes (called bilateral retinoblastoma). Pineoblastoma is a type of childhood brain tumour that occurs in the pineal gland. The pineal gland is a gland in the brain that controls the sleep cycle and plays a role in sexual maturation. Children with trilateral retinoblastoma often have a poorer prognosis.

Expert review and references

  • American Cancer Society. Retinoblastoma. Atlanta: American Cancer Society; 2011.
  • American Society of Clinical Oncology. Retinoblastoma - Childhood. 2015.
  • Hendershot E . Retinoblastoma. Baggott C, Fochtman D, Foley GV, Patterson K (eds.). Nursing Care of Children and Adolescents with Cancer and Blood Disorders. 4th ed. APHON; 2011: 34: 1106-1120.
  • Hurwitz RL, Shields CL, Shields JA, et al . Retinoblastoma. Pizzo, P. A. & Poplack, D. G. (Eds.). Principles and Practice of Pediatric Oncology. 6th ed. Philadelphia: Lippincott Williams & Wilkins; 2011: 27: pp. 809-837.
  • Khetan V, Chan HSL, Wang L, et al . Retinoblastoma. Gospodarowicz, M. K., O'Sullivan, B., Sobin, L. H., et al. (Eds.). Prognostic Factors in Cancer. 3rd ed. Hoboken, NJ: John Wiley & Sons, Inc.; 2006: 39: pp. 273-277.
  • Korones DN . Retinoblastoma. Beers, M. H., & Berkow, R., (Eds.). Merck Manual for Healthcare Professionals. Rahway, NJ: Merck Research Laboratories; 2009.
  • Pediatric Cancers - Retinoblastoma. Medical University of South Carolina. MUSC Children's Hospital. Charleston, SC: Medical University of South Carolina; 2012.
  • National Cancer Institute. Retinoblastoma Treatment (PDQ®) - Patient Version. Bethesda, MD: National Cancer Institute; 2011.
  • St. Jude Children's Research Hospital. Retinoblastoma. Memphis, TN: St. Jude Children's Research Hospital; 2017.
  • Zieve D & Chen Y . Retinoblastoma. National Cancer Institute & National Library of Medicine. MedlinePlus: Trusted Health Information For You: Medical Encyclopedia. Bethesda, MD: National Cancer Institute & National Library of Medicine; 2010.

Survival statistics for retinoblastoma

Survival statistics for retinoblastoma are very general estimates and must be interpreted very carefully. Because these statistics are based on the experience of groups of children, they cannot be used to predict a particular child’s chances of survival.

Medical disclaimer

The information that the Canadian Cancer Society provides does not replace your relationship with your doctor. The information is for your general use, so be sure to talk to a qualified healthcare professional before making medical decisions or if you have questions about your health.

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