Retinoblastoma: Early Detection Saves Children’s Sight And Lives

Ranjeet Singh, a hawker from Bhopal, noticed a white reflection in his daughter Trivika’s eye when she was four months old. Initially dismissing it as a camera glare, he sought medical help only after the symptom persisted. The diagnosis — childhood eye cancer ie retinoblastoma.

“If we had waited longer, we might have lost her. Thanks to early diagnosis and treatment at AIIMS, she’s healthy and playing like any other child today,” he said. The family also benefited from financial assistance through the Ayushman Bharat scheme. “The only expenses I had were for food and frequent travel to the hospital for treatment.”

Another parent, who did not wish to be named, shared the emotional and financial toll of navigating treatment from a small town, nevertheless emphasising the critical role played by AIIMS in guiding them through an unfamiliar and terrifying journey.

These are just a few among many moving accounts that parents shared with The Outlook about their children’s battles with retinoblastoma. They were in the national capital to attend a public lecture and panel discussion on ‘Retinoblastoma: What should you know?’ organized by AIIMS Delhi recently.

The session was inaugurated by AIIMS Delhi Director M. Srinvasan and Chief Dr. RP Centre of the institute Dr. Radhika Tandon.

The parents of the afflicted children agreed with the doctors sitting on the dais that significant improvements in outcomes for children with retinoblastoma, a rare but curable eye cancer, can be achieved through early detection, timely diagnosis, and access to specialized care.

Dr. Bhavna Chawla, Ophthalmologist at the institute noted that the most common early sign of retinoblastoma is leukocoria — a white, yellow, or grey reflection in the pupil, often spotted in flash photos. Other signs include persistent squint, redness or swelling without infection and eye not showing a red reflex in photos.

Lack of eye focus or visual tracking is yet another symptom that indicates existence of retinoblastoma.

Dr. Chawla shared that India accounts for one-fourth of the global retinoblastoma burden, with one in every 20,000 children affected.

Professor and officer-in-charge of community ophthalmology at the institute, Dr. Praveen Vashist called for the inclusion of Rb in the National Eye Health Programme to enable early detection at primary health centers (Arogya Mandirs). He also urged that eye checks be made mandatory during childhood immunizations and emphasized regular follow-ups.

“Early diagnosis is vital,” Dr. Rachna Seth, Professor of Pediatric Oncology at the institute said adding that 95% of children can be cured if treatment starts before the cancer spreads beyond the eye. Other early symptoms include squinting, redness, watering of the eye, or a visibly shrunken eye. If left untreated, the disease can advance to more severe stages, causing the eye to bulge or swell, and in extreme cases, form a large tumour mass, she echoed Dr. Chawla’s views.

Newer treatment options like intra-arterial chemotherapy i.e. targeted chemotherapy and plaque brachytherapy can help preserve the eye in children with advanced-stage cancer. “We are also using BARC-developed plaque technology to treat the Rb in kids,” she pointed out.

Dr. Seth added that chemotherapy does have side effects like nausea, vomiting, hair loss, drop in blood counts, changes in nails, skin, etc. But chemotherapy helps kill cancer cells and prevents the spread of cancer in the body, so the risk of untreated or partially treated cancer is much more than the side effects of chemotherapy, said Dr. Seth.

When chemotherapy fails to yield results, radiation therapy becomes a crucial alternative in treating retinoblastoma wherein a radiation source is placed inside the eye, targeting and destroying cancerous cells within days.

However, surgery is meant for large tumors that cannot be controlled through other treatments. Also, surgical removal of the eye (enucleation) typically results in permanent vision loss in that eye, making it a last-resort option, informed Dr. Seth. At the same time, Dr. Neiwete Lomi, Ophthalmologist at the premier health institute, elaborated on the precautions patients must take both before and after surgery, given the seriousness of the procedure.

Dr. Rima Dada, Professor from the Department of Anatomy at the institute emphasised the genetic basis of retinoblastoma and the role of oxidative stress due to poor lifestyle choices — including smoking, alcohol, and environmental exposures — in increasing disease risk.

She stressed the importance of genetic counseling, especially for families with a history of Rb, and called for screening of siblings and offspring of affected children. Regular yoga and stress reduction practices, she noted, can reduce DNA damage and improve overall outcomes.

AIIMS has recently introduced Gamma Knife therapy for children with retinoblastoma who don’t respond to standard treatments.

This non-invasive technique aiming to deliver targeted radiation to the tumor with minimal damage to healthy tissue has been applied on two children with difficult childhood eye cancer. Early results are promising, offering hope for vision preservation in complex cases.

The medical team anticipates receiving the outcomes within a couple of months and remains optimistic. This alternative treatment becomes relevant when conventional methods like chemotherapy fail to show results. The gamma knife technique utilises focused radiation beams to target the tumour specifically while protecting surrounding healthy tissues, shared Dr. Deepak Agrawal, neurosurgeon at the institute.

Patients with hereditary retinoblastoma also require long-term follow-up with systemic oncologists because such patients have an increased lifetime risk of developing secondary malignancies throughout the body, Dr. Seth reminded the parents of the kids who have undergone the treatment for the disease.