Overview
Non-hereditary retinoblastoma, also called sporadic retinoblastoma, is a type of eye cancer that develops in the retina — the light-sensitive tissue at the back of the eye. Unlike the hereditary form, this type is not passed down from parents. Instead, it happens when both copies of the RB1 gene in a single retinal cell become damaged by chance during a child's early development. This means the genetic change occurs only in the tumor cells and is not present throughout the body. Non-hereditary retinoblastoma almost always affects only one eye (unilateral). It is typically diagnosed in young children, most often between the ages of 1 and 3 years. The most common first sign parents notice is a white glow or reflection in the pupil of the eye, sometimes called "cat's eye reflex" or leukocoria. This white glow is often first seen in photographs taken with a flash. Other signs include a crossed or misaligned eye (strabismus), redness, swelling, or changes in vision. Treatment depends on the size and location of the tumor and how advanced the disease is at diagnosis. Options include chemotherapy (given through a vein, directly into the eye, or into the artery feeding the eye), laser therapy, cryotherapy (freezing treatment), radiation therapy, and in some cases surgical removal of the eye (enucleation). With early detection and modern treatments, the survival rate for non-hereditary retinoblastoma is very high — over 95% in developed countries. Because this form is not inherited, the risk of developing cancer in the other eye or other parts of the body later in life is much lower than in the hereditary form.
Key symptoms:
White glow or reflection in the pupil (leukocoria)Crossed or misaligned eyes (strabismus)Redness of the eyeSwelling around the eyePoor vision or vision loss in the affected eyeChange in the color of the irisEnlarged pupilEye painBulging of the eye in advanced casesFailure to track objects with the affected eye
Sporadic
Usually appears on its own, not inherited from a parent
Infantile
Begins in infancy, roughly 1 month to 2 years old
Treatments
No FDA-approved treatments are currently listed for Non-hereditary retinoblastoma.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Non-hereditary retinoblastoma at this time.
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Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Non-hereditary retinoblastoma.
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Questions for your doctor
Bring these to your next appointment
- Q1.What stage is my child's retinoblastoma, and has it spread beyond the eye?,What treatment options are available, and is there a chance of saving the eye and vision?,Has genetic testing confirmed that this is the non-hereditary form, and what does that mean for my other children or future pregnancies?,How often will my child need follow-up eye exams, and for how long?,What are the short-term and long-term side effects of the recommended treatment?,Are there clinical trials or newer treatments that might be appropriate for my child?,What support services are available for my child and our family during and after treatment?
Common questions about Non-hereditary retinoblastoma
What is Non-hereditary retinoblastoma?
Non-hereditary retinoblastoma, also called sporadic retinoblastoma, is a type of eye cancer that develops in the retina — the light-sensitive tissue at the back of the eye. Unlike the hereditary form, this type is not passed down from parents. Instead, it happens when both copies of the RB1 gene in a single retinal cell become damaged by chance during a child's early development. This means the genetic change occurs only in the tumor cells and is not present throughout the body. Non-hereditary retinoblastoma almost always affects only one eye (unilateral). It is typically diagnosed in young c
How is Non-hereditary retinoblastoma inherited?
Non-hereditary retinoblastoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Non-hereditary retinoblastoma typically begin?
Typical onset of Non-hereditary retinoblastoma is infantile. Age of onset can vary across affected individuals.
Which specialists treat Non-hereditary retinoblastoma?
7 specialists and care centers treating Non-hereditary retinoblastoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.