About 1500 children are diagnosed with a rare eye cancer, or retinoblastoma, every year in India. If an average Indian classroom has 50 students, the number afflicted with retinoblastoma would cover one whole school each year.
The irony is, many of these children diagnosed with retinoblastoma will never go to school. Retinoblastoma primarily affects children between the ages of one and five years. Sadly, most of these children could have been learning their standing and sleeping lines if one informed adult had given a seemingly innocuous eye problem more thought.
According to Santosh Honavar, ocular oncologist with LV Prasad Eye Institute, Hyderabad, and one of India’s most highly regarded retinoblastoma specialists, “The lives of 95% of children who receive protocol-based treatment can be saved.” Treatment can save the eyes of at least 70% of the children diagnosed overall. That’s 2,100 eyes saved every year. For the others, the only viable option is to remove the eye.
The reasoning sounds simple; but reality, whether in rural India or the national capital, is different.
What that long word means
Retinoblastoma is literally cancer that attacks the retina. Till a decade or so ago, this rare condition was fatal since just 3 of 10 advanced cases were curable.
Also Read more about retinoblastoma in our earlier article ‘Looking Ahead’
Advancements in early diagnosis and in treatment made it possible to cure 9 of 10 patients. In the last few years, say experts in India, the introduction of new treatment techniques such as periocular chemotherapy with nanoparticles has ensured that the vision and lives of 70% of children with advanced retinoblastoma are saved. This is a huge jump from the earlier 30%.
When ignorance is not bliss
Sadly, the 30% of children who lose their vision or even their life to retinoblastoma are not entirely let down by technology being beaten by a raging tumour. “The major loose link in retinoblastoma is the delay in diagnosis,” points out Dr Santosh Honavar, who continues to see patients in advanced stages. As you read this, Shreyas Barthwal of NOIDA, just 22 months old, battles retinoblastoma.
His parents were concerned about a squint in the right eye of their two-month-old baby and took him to several established hospitals, but paediatricians dismissed the squint as innocuous. Shreyas also had white flecks on his eye ball from the time he was a few months old. By the time the cancer was detected and treatment began at LV Prasad Eye Institute, Shreyas, an active and seemingly healthy baby, was about 18 months old. The tumour had spread to both eyes by then. While the average eyeball measures about 25mm across, the tumour in Shreyas’ right eye was 20mm. The right eye may have suffered irreparable damage, those treating him fear. Doctors are trying to save what they can of his left eye.
The Barthwals are coming to grips with the harm that the delay in diagnosis has caused. Says Shreyas’ father Naveen Barthwal, “My anger and agony are directed at the paediatricians we go to for routine vaccinations. They are authorized to treat the child, and it is their duty to spot minor abnormalities and conduct a complete examination of the child.”
Vijay Anand P Reddy, Director, Apollo Cancer Institute, Hyderabad and Consultant Oncologist, L V Prasad Eye Institute, Hyderabad, agrees: ”For children in the 0-4 years age group, the primary physician is the paediatrician: It is quite likely that every parent takes the child to see a paediatrician for either vaccination, a common cold or other problem. So I feel that paediatricians should be alert and consciously look into the eyes of the child who is in their care”. And it is incumbent on them to do so even when the parents do not report an eye problem.Yet, the eye check is often overlooked while doctors peer into problems of the ear, throat and nose. Just “asking the parents a question or two… will help the paediatrician identify if the child requires a complete eye examination,” adds Dr Reddy.
Vasantha Thavaraj, from the Department of Paediatrics, All India Institute of Medical Sciences (AIIMS), Delhi is also Deputy Director (Indian Council of Medical Research). She has seen over 1,200 cases of retinoblastoma since 1990. Dr Thavaraj says, “Even ophthalmologists have misguided parents by prescribing eye drops for up to one year.”
Spreading the word
Some hospitals, such as AIIMS, are stepping up awareness drives among the lay parents as well as among doctors. The L V Prasad Eye Institute has distributed posters in Hindi, Telugu and English among paediatricians and ophthalmologists in Andhra Pradesh. And the initiative is working. Dr Thavaraj, who has spearheaded several awareness camps, has seen a change since 1990. “Earlier, I’d see patients in the advanced stage 4 all the time... Now, more than half the cases I see are intraocular retinoblastoma, which is a much earlier stage and curable. About 40% are advanced extra-ocular cases.”
Dr Thavaraj is now studying the possibility of introducing an eye screening programme with the mandatory immunization schedule. He would like to see each child have a separate eye health card and get screened for retinoblastoma. “I hope to train district-level doctors, including paediatricians, through workshops repeatedly for a year and then see how it goes.”
She has already carried out something similar in Najafgarh, Delhi, screening 700 children at the district hospital after their pulse polio immunization in 2005.
Two years down the line
That would bring some peace to the Barthwals who now spread the word about early symptoms of retinoblastoma wherever they can. “We cried all day when we learnt about Shreyas’ tumours,” recall the Barthwals. Through the six cycles of chemotherapy, they “wept and shattered a thousand times”. Because they know now what Dr Reddy points out: “With early diagnosis, we will be able to save the life of the child, the cancer can be treated so that the eyes are not removed and the child’s eyesight can be protected. The paediatrician is key to early diagnosis of retinoblastoma.”
Make it a habit to observe children’s eyes. Get them checked if you notice:
• ‘cat’s eye’ or a whitish pupil that reflects light
• a squint
• photograph shows no healthy red glint in the pupil (deplored as ‘red eye’, this is actually a sign of a normal retina)
• a spot growing on the iris
• a bulge in the eye
• unusual or uncoordinated eye movements
• complaints of floating spots or flashes of light
• a family history of retinoblastoma (the faulty Rb gene can lead to bilateral retinoblastoma, which affects both eyes: one of three cases is genetic, so if there is a family history, screen the child regularly until she is five years old)
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