Pediatric Retinoblastoma Program

Our approach to retinoblastoma care

Retinoblastoma is highly treatable when detected early. That's why we focus on prompt diagnosis and timely treatment. Your family has access to all the specialists your child needs, with coordinated care at every step.

Retinoblastoma diagnosis

Most children with retinoblastoma are diagnosed within the first few years of life, usually before age 5. Retinoblastoma results from a change (mutation) in a gene called RB1.

This mutation can be hereditary (passed down through families) or occur randomly. Our ocular oncology team provides a comprehensive eye exam, imaging and genetic testing to check for retinoblastoma and assess each child's risk.

Genetic testing for retinoblastoma

Genetic testing can determine whether a child has an inherited RB1 gene mutation. This information helps guide treatment decisions and long-term monitoring.

If an expectant parent has a known RB1 gene mutation, we can do prenatal testing to determine if their baby has it. Knowing before birth whether a baby has an increased risk allows us to plan early screening and begin treatment soon after delivery, if needed.

Families with an increased risk of retinoblastoma can receive ongoing care through UCSF's pediatric cancer genetics and prevention program. Genetic counselors help families understand the results of genetic testing and what they may mean for their child's risk of retinoblastoma and other cancers over time.

Retinoblastoma treatment

Children with retinoblastoma receive expert care from our pediatric oncology team. We tailor treatment to each child, based on:

• Their age

• Size and location of the tumor

• Whether one or both eyes are affected

• Whether cancer has spread to other areas

Your child may receive anesthesia for some exams and treatments. Our pediatric anesthesia team carefully monitors your child to help ensure their safety and comfort.

Treatment options include:

• Intravenous chemotherapy. Children younger than 3 months may have chemotherapy through an IV until they're old enough for other treatments.

• Intra-arterial chemotherapy. An interventional neuroradiologist delivers chemotherapy directly to the eye through the ophthalmic arteries.

• Intravitreal chemotherapy. This treatment delivers chemotherapy directly into the vitreous, the clear gel in front of the retina.

• Focal treatments. We may use laser therapy (heat) or cryotherapy (cold) to destroy small eye tumors while preserving the eye.

• Enucleation. This surgery removes the eye. We may recommend it when cancer affects only one eye and has not spread beyond that eye.

For cancer that has spread beyond the eye to the optic nerve or brain, we may use high-dose chemotherapy followed by stem cell transplantation. We may also offer radiation therapy to help ease symptoms from cancer that has spread to the brain, spine or other areas of the body.

Ongoing care and support

We connect families to resources for continued care and support after treatment, including:

• Eye exams. Our ophthalmologists provide regular exams to evaluate vision and recommend protective eyewear, when needed.

• Prosthetic eye care. If your child has had enucleation and uses a prosthetic (artificial) eye, we provide guidance on prosthetic care. Our social worker can also work with your child's school to arrange accommodations and learning support.

• Survivorship care. Children who have had chemotherapy or a stem cell transplant can receive follow-up care through our pediatric survivorship program.

Authoring Notes

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Content source URLs (1)

• https://www.ucsfbenioffchildrens.org/clinics/retinoblastoma-program

Word doc notes (6)

Emily Quinlan · 2026-09-16T09:20:00Z
Anchored to: “Pediatric Retinoblastoma Program”

UCSF: Per Jenny 6/25/26: "I recommend that we keep this as a dedicated service page called Pediatric Retinoblastoma Program on the new site.

I don't think we should fold it into our condition page on retinoblastoma or our pediatric ophtho service page or broaden its framing to something like pediatric eye cancer.

Google Search Console data and a Claude-assisted analysis show that the legacy page captures searches specific to patients and referrers who are looking for pediatric retinoblastoma care. Rolling the content into a page on a broader topic (like ophtho or eye cancer) would dilute this.

Also, apparently, broadening to "eye cancer" would be misleading since other eye cancers would likely involve other specialties and providers, so the page title would end up implying something that the page content wouldn't support. And retinoblastoma is the most common form of pediatric eye cancer, so it makes sense to have a program dedicated to it.

A reason not to fold it into the retinoblastoma condition page is that that page meets a different search intent that's more focused on understanding the condition. What we have to say about our retinoblastoma expertise/differentiators can have a stronger impact in SEO/AIO when housed on a dedicated service page than it would on a condition page, which, as more of a "health library" type of page, has to compete with heavy-hitters like Mayo Clinic, Wikipedia, etc. Where we can shine is on a page focused on the care we provide and on helping people easily find their way to the appointment/referral CTAs, locations, providers, etc."

Emily Quinlan · 2026-09-16T09:28:00Z
Anchored to: “CTA 1 (Optional)”

UCSF: Phone number: (415) 514-6918

Margaret LeFevre · 2026-09-23T16:52:00Z
Anchored to: “Review”

Valerie: Both Fabienne Hollinger RN, MSN, and FNP-C

Dr. Anu Banerjee are named in Airtable as R2 reviewers. Can you confirm for us, if possible, who the Primary R2 Reviewer should be?

Pratz, Valerie · 2026-09-24T10:36:00Z
Anchored to: “Review”

Banerjee

Lauren Lamb · 2026-10-08T08:48:00Z
Anchored to: “N/A”

UCSF: We interviewed Fabienne Hollinger on 7/21/26, but per Valerie Pratz, Dr. Banerjee should be the primary SME reviewer. Dr. Banerjee never replied with feedback by our requested due date of 10/6/26, so per our process, we are moving this page into R3 final review with Tim McGrath on 10/8/26.

Lauren Lamb · 2026-10-23T11:46:00Z
Anchored to: “Pediatric Retinoblastoma Program”

UCSF: Page title updated to “Pediatric Retinoblastoma Program” per Valerie Pratz and Tim McGrath. Todd advised page title updates in the CDP will be automatically handled and cross-checked.