Retinoblastoma — eye cancer in children explained

UNDERSTANDING THE DIAGNOSIS

What is retinoblastoma?

Retinoblastoma is a malignant tumour that begins in the retina — the tissue that lines the inside back wall of the eye and converts light into nerve signals. The tumour arises from immature retinal cells during early childhood, which is why it is almost never seen in adults. It can grow in one eye (unilateral retinoblastoma) or both eyes simultaneously (bilateral retinoblastoma).

Retinoblastoma is classified as intraocular (confined within the eye) or extraocular (spread beyond the eye to the optic nerve, orbit, or distant organs). Most children in India are diagnosed with intraocular disease. The earlier a tumour is found while it is still confined to the eye, the more treatment options are available — including those that can preserve vision alongside saving the child's life.

You may have come to this page after noticing a white glow in your child's eye in a flash photograph, or after a doctor mentioned the possibility during a routine check. It is completely natural to feel frightened. The information here is designed to help you understand what retinoblastoma is, what to expect from the diagnostic process, and how a coordinated specialist team approaches care — so that you can walk into your next appointment with clearer questions and a calmer mind.

For guidance on recognising the earliest visual signs in your child, see our dedicated pages on white glow in a child's eye in photos and new squint or vision change in a child. Return to the pediatric cancer hub for the full range of childhood cancer information.

SIGNS EVERY PARENT SHOULD KNOW

Warning signs of eye cancer in a child

Most of the signs below can also have innocent explanations. The important thing is not to assume — if you notice any of these, arrange a medical review as soon as possible. Early evaluation rules out a problem quickly and, if there is one, gives your child the most options.

This page does not diagnose. A white reflex, squint, or eye redness has many possible causes — most are not cancer. What matters is that a qualified ophthalmologist examines the eye under appropriate conditions so the correct answer is found quickly.

THE DIAGNOSTIC PROCESS

How retinoblastoma is diagnosed

Diagnosis involves several steps carried out by a coordinated team of specialists. Knowing what to expect can make each appointment a little less overwhelming.

1. 1

   Referral and initial assessment

   The process usually begins when a parent, paediatrician, or optometrist notices an abnormal eye sign and refers the child to an ophthalmologist. At the first visit, the doctor takes a careful history and performs an external eye examination — checking vision, pupil reactions, and eye movements.

2. 2

   Examination under anaesthesia (EUA)

   Because young children cannot cooperate with a full retinal examination while awake, they are briefly put under a general anaesthetic. This allows the ophthalmologist to examine the entire retina in detail using a special lens and bright light, document the number and location of tumours, and take photographs or maps of the eye for future comparison.

3. 3

   Ocular ultrasound

   Ultrasound of the eye is performed during or around the EUA. It measures the tumour's size, confirms it is within the eye, and looks for calcium deposits — a characteristic feature of retinoblastoma that helps distinguish it from other eye conditions in children.

4. 4

   MRI of the brain and orbits

   MRI is the preferred imaging test to check whether the tumour has spread to the optic nerve — which runs from the eye to the brain — or to the surrounding bony orbit. It also screens for any tumours in the brain (trilateral retinoblastoma). CT is generally avoided in children with retinoblastoma because of radiation exposure concerns and the association with secondary cancers in the hereditary form.

5. 5

   Tumour board review and staging

   Once all findings are gathered, the case is reviewed by a multidisciplinary tumor board — including a pediatric ophthalmologist, a medical oncologist, a radiation oncologist, and a radiologist. The team uses an internationally recognised grouping system to classify the severity of intraocular disease in each eye and agrees on an individualised treatment plan. At CION, every child's case receives this coordinated review before any treatment begins.

TYPES OF RETINOBLASTOMA

Understanding the different forms of eye cancer in children

Retinoblastoma is not a single uniform disease. Understanding which form your child has shapes every aspect of the plan — from which eye or eyes are treated, to whether siblings need screening, to long-term follow-up considerations.

Every child at CION is reviewed by a full tumor board

Medical, surgical, and radiation oncologists together — before any treatment decision is made. 45-minute consultations. Transparent costs. No unnecessary tests.

Disclaimer: This page provides general information only. It does not constitute medical advice and is not a substitute for a consultation with a qualified medical professional. Always speak to your child's doctor or a specialist before making any treatment decisions.