Living with Bilateral retinoblastoma
A cancer of the retina in both eyes that mainly affects young children.
Understanding Bilateral retinoblastoma
Most children are diagnosed between ages 1 and 2. Retinoblastoma is the most common eye cancer of infancy and childhood, occurring in about 1 in 15,000 to 20,000 live births. About 40% of cases involve both eyes. Tumors can spread to the eye socket through the optic nerve and may spread to the brain, lungs, and bones.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with World Eye Cancer Hope
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Bilateral and multifocal forms are usually hereditary and caused by changes in the RB1 gene.
Patient organizations
- World Eye Cancer HopeBilateral retinoblastoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Bilateral retinoblastoma.
Explore research for Bilateral retinoblastoma
Explore actively recruiting Bilateral retinoblastoma studies with HealthSpark.
Find actively recruiting studies for Bilateral retinoblastoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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