Español
PDFs by language
Our 24/7 cancer helpline provides information and answers for people dealing with cancer. We can connect you with trained cancer information specialists who will answer questions about a cancer diagnosis and provide guidance and a compassionate ear.
Chat live online
Select the Live Chat button at the bottom of the page
Our highly trained specialists are available 24/7 via phone and on weekdays can assist through online chat. We connect patients, caregivers, and family members with essential services and resources at every step of their cancer journey. Ask us how you can get involved and support the fight against cancer. Some of the topics we can assist with include:
For medical questions, we encourage you to review our information with your doctor.
Retinoblastoma is a rare cancer, and there are no widely recommended screening tests for retinoblastoma. (Screening is testing for a disease like cancer in people with no signs or symptoms.) Still, many retinoblastomas are found early by parents, relatives, or a child’s doctor.
During children’s regular physical exams, doctors routinely check their eyes. Some of the things doctors look for include:
Any of these might be a sign of retinoblastoma, although they are more often caused by something else.
Sometimes, a parent or relative might notice that a young child’s eye doesn’t look normal, and it will prompt a visit to the doctor. It’s important for parents to be aware of the possible signs and symptoms of retinoblastoma, and to report anything unusual to the doctor as soon as possible. Most often the cause is something other than retinoblastoma, but it’s important to have it checked so that the cause can be found and treated right away, if needed.
For children in families known to carry an RB1 gene change (which causes heritable retinoblastoma), or in families with a history of retinoblastoma who have not had genetic testing for RB1 gene changes, doctors recommend regular, thorough eye exams during the first years of life to detect tumors at an early stage. These children might need an eye exam soon after birth, and then frequently during the first years of life.
The RB1 gene defect can be found by a special blood test, so most doctors now advise that children with parents or siblings with a history of retinoblastoma have this genetic test done during the first few weeks after birth. The results of the test then help define how often eye exams should be done. For example, children at risk because they have an RB1 gene change might need an eye exam every month or so during the first year, and then every few months until at least age 4 or 5.
Children with the heritable form of retinoblastoma usually develop tumors in both eyes (bilateral retinoblastoma). Most heritable retinoblastomas develop and are diagnosed in infants only a few months old. Usually, if tumors develop in both eyes, it happens at the same time. But in some children, tumors develop in one eye first, then a few months (or even years) later in the other eye. So even if retinoblastoma is diagnosed in only one eye, these children will still need regular exams of the other eye for several years after treatment.
If a child has retinoblastoma that is thought to be hereditary, many doctors also recommend magnetic resonance imaging (MRI) scans of the brain at regular intervals for up to 5 years to check for a trilateral retinoblastoma (which includes a brain tumor such as a pineoblastoma). For more information, see Tests for Retinoblastoma.
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as editors and translators with extensive experience in medical writing.
Hurwitz RL, Shields CL, Shields JA, et al. Chapter 27: Retinoblastoma. In: Pizzo PA, Poplack DG, eds. Principles and Practice of Pediatric Oncology. 7th ed. Philadelphia, Pa: Lippincott Williams & Wilkins; 2016.
Kaufman PL, Kim J, Berry JL. Retinoblastoma: Clinical presentation, evaluation, and diagnosis. UpToDate. Accessed at www.uptodate.com/contents/retinoblastoma-clinical-presentation-evaluation-and-diagnosis on September 18, 2018.
National Cancer Institute. Retinoblastoma Treatment (PDQ®). 2018. Accessed at www.cancer.gov/types/retinoblastoma/hp/retinoblastoma-treatment-pdq on September 18, 2018.
Rodriguez-Galindo C, Orbach DB, VanderVeen D. Retinoblastoma. Pediatr Clin North Am. 2015;62(1):201-223.
Last Revised: December 3, 2018
American Cancer Society medical information is copyrighted material. For reprint requests, please see our Content Usage Policy.
Sign up to stay up-to-date with news, valuable information, and ways to get involved with the American Cancer Society.
If this was helpful, donate to help fund patient support services, research, and cancer content updates.