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Retinoblastoma among children: Early detection and treatment are vital

Since retinoblastoma is inherited mostly from the genes, there are no fixed measures of prevention. But keeping optimal care of your eyes on a regular basis may help reduce the risk.

The World Retinoblastoma Awareness Week is observed every year in May. This year it falls between May 8-14, when healthcare providers around the world come together to create public awareness about retinoblastoma. It is the most common and life-threatening eye cancer in children, less than five years of age. It can affect any socio-economic group without any racial or gender preference. It can affect either one or both eyes. It is a type of eye cancer that begins in the retina – the sensitive lining inside the eye. It is quite rare and is usually caused by a genetic mutation that makes the cells in the eye multiply rapidly and thereby forming an abnormal growth. With improved techniques, the survival of children with Retinoblastoma has improved but low awareness is still a cause of concern. Hence early detection and treatment is vital to control the malignant growth, thereby saving the vision and child’s life.

Every year, almost 1 in 10,000 live births in the world has retinoblastoma and India has been proposed to have 3 times this global average and recorded as the highest number of affected children in the world. While the survival rate for retinoblastoma is over 95% in the developed countries, it is around 40-75% in developing nations like India due to a combination of multiple factors like poverty, illiteracy, lack of awareness, delay in seeking medical attention, and lack of access to healthcare resources. The care of retinoblastoma children during the pandemic was challenging as the nationwide lockdown had deprived retinoblastoma patients of optimal management. The entire impact of the pandemic on retinoblastoma management is still not known, but it is important to increase awareness of the timeliness of diagnosis and treatment.


Some early cancers may have signs and symptoms that can be noticed, but that is not always the case. At early stages, the symptoms might be very subtle due to which the child may seem fit, but delay in diagnosing retinoblastoma can lead to advanced stages at presentation which may necessitate prompt removal of the affected eye. The most common presentation of this disease is with abnormal light reflex “white eye”, or “cat’s eye reflex” noted usually by neighbours or relatives. This is easily identified using flashlight photography seen as a white reflex. Crossed eyes or ‘squint’, swelling, irritation and endless watering are other common symptoms. The vision is lost rapidly and the child might frequently bump into objects and get hurt. There are other eye diseases which may present with similar signs and symptoms as retinoblastoma. This has to be confirmed after evaluation by an ocular oncologist.


When diagnosed early there is good chance of both vision and eye-ball preservation. In some cases, when diagnosed late, the eye-ball might have to be removed to prevent spread of the cancer in the whole body. Scans and other imaging tests can help your child’s doctor determine whether retinoblastoma has grown to affect other structures around the eye. With advanced chemotherapy techniques and local forms of therapy, we are able to preserve vision also in many cases. Retinoblastoma requires multidisciplinary coordinated care, and it requires involvement of multiples specialties, including ophthalmology, oncology, radiology, genetics, anaesthetist and others.


Since retinoblastoma is inherited mostly from the genes, there are no fixed measures of prevention. But keeping optimal care of your eyes on a regular basis may help reduce the risk. Awareness on retinoblastoma is very crucial, especially when the world is amidst a pandemic. Many patients have reported eye infections post-covid and that should not be neglected. Eye infections might look like a small issue, but if not treated can turn fatal, hence we should always indulge in regular medical check-ups, particularly for children as precaution is always better than cure.

It is important to note that there is a chance of the cancer returning even after completing the treatment for retinoblastoma. Furthermore, children who have inherited this genetic mutation have a high chance of developing cancer in other parts of their body as well, hence regular follow-ups and screening is essential.

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