Living with Retinoblastoma
A rare eye cancer that usually develops in early childhood in the retina, often in one eye.
Understanding Retinoblastoma
It typically develops before age 5. It often affects only one eye, but one in three children has it in both. The most common first sign is a white pupil (leukocoria), especially in dim light or flash photos. GARD notes it is often curable when found early. The hereditary form raises the risk of some other cancers.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- White glow in the pupil (leukocoria)
- Crossed eyes (strabismus)
- Bulging eye (proptosis)
- Glaucoma
- Change in iris color
- Red, sore, or swollen eyelids
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
Specialists who may be involved include cancer specialists and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation
- 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 Alex's Lemonade Stand Foundation and other patient organizations
- 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
GARD lists autosomal dominant inheritance. The hereditary form is linked to a gene change in all of the body's cells. It does not name a gene.
Also known as: rb; rb - retinoblastoma; rb1; retina tumor; retina tumour; retinoblastoma - morphology
Patient organizations
- Alex's Lemonade Stand FoundationRetinoblastoma · United States
- A Cure In SightRetinoblastoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Retinoblastoma.
Explore research for Retinoblastoma
Explore actively recruiting Retinoblastoma studies with HealthSpark.
Find actively recruiting studies for 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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