Keep an eye on your child’s eyes: that white spot might be cancer

Keep an eye on your child’s eyes: that white spot might be cancer

Published in Livemint.com

Link: http://www.livemint.com/2009/05/18221318/Keep-an-eye-on-your-child821.html

It was the third World Retinoblastoma Awareness Week from 10-16 May 2009. Time to take a look at a disease that is not be so deadly if diagnosed early

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.”
Watch out!
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)

LOOKING AHEAD

THIS ARTICLE WAS PUBLISHED IN LIVEMINT.COM
LINK: http://www.livemint.com/2007/05/21234645/Looking-ahead.html
LOOKING AHEAD
Retinoblastoma, a cancer of the eye, can cause blindness, even death, if left untreated. However, it is fairly easy to spot the symptom's telltale symptoms.
by Benita Sen
You’ve heard of blood cancer, cancer of the lungs, mouth, colon, cervix and breast. But cancer of the eyes? If you ask people at random, most of them would be incredulous that cancer can strike the eyes. Retinoblastoma affects a large number of children between the ages of one and five.
Till a few decades ago, this rare cancer that attacks the retina was considered fatal. Of late, however, early detection and medical and technological advances have turned that tide. Today, nine of 10 child patients can be cured in ‘advanced’ countries. In Europe, for instance, the five-year survival rate in children suffering from retinoblastoma went up from 85% in the 1970s to 90% in the 1980s and stood at 91% in the 1990s even while the incidence of retinoblastoma for the same period fell from 3.6 per million in the 1970s to 3.1 per million in the 1990s (Source:The Cancer Atlas published by the American Cancer Society).
Ocular oncology is a relatively new field of ophthalmology, and that perhaps explains to some extent why in India ocular oncologists see more of advanced retinoblastoma. An alarming number of general practitioners and even general ophthalmologists are not too knowledgeable about it. Says Dr Santosh Honavar, ocular oncologist at the L.V. Prasad Eye Institute, Hyderabad: “Delayed diagnosis of retinoblastoma is a problem unique to the developing world, and a problem that historically has poor prognosis.”
If detected early, the spread of cancer can be arrested, salvaging the eye, optimizing residual vision and, in extreme cases, saving a life. About 95% of children with retinoblastoma can be saved and vision kept useful in about 85% if the tumour is detected before the cancer destroys vital parts of the eye or spreads to other parts of the body, says Honavar.
Sadly, we still lose children to cancer that begins in the eye. In India, adds Honavar, cancer is among the leading causes of death among children below 14. Retinoblastoma and other eye cancers account for about 20-30% of all cancers; of these, about 30% cases are in children. In every 10 cases of retinoblastoma in children in India, about seven are unilateral or in one eye. While the disease can affect both eyes, cases where one eye is affected are generally detected by the time the children are about two or three years old. Those with both eyes affected are diagnosed between one and two years and seldom after they turn five.
An attentive adult, whether a member of the family, a doctor or a teacher, can save a child’s life. Take, for instance, the case of New Delhi’s Krish, who completed a year this March. He was about two months old when his parents took him to a paediatrician for diarrhoea.
One look at his eyes which could not coordinate, and the doctor suspected trouble. A specialist diagnosed retinoblastoma in both eyes. Krish was completely blind, a fact that his parents had not suspected since they did not know the symptoms. Treated for over 10 months, Krish has got back 50% vision in one eye and 20% in the other. He awaits a cataract surgery in June, after which he should be able to see better.
One of the surest indicators of retinoblastoma is to look at a photograph taken with a flash. Many parents have missed the healthy red glint in the child’s eye and consulted the doctor reporting a white reflex, only to confirm retinoblastoma. While most children with retinoblastoma appear like any other, attentive parents should watch out for the cat’s eye or a pupil that looks white and reflects light in what is called the cat’s eye reflex. Some children have a squint or persistent redness that comes with the cornea being clouded over, while some may have problems with their vision, even though they do not complain of pain in most cases. It may be difficult for the parents to detect poor vision in one eye, so check if the child resents closure of one eye at random. “This simple test can be done at home while the child is at play or watching television,” suggests Honavar. Some mothers suspect something wrong when they observe the eye bulge or move unnaturally.
What goes wrong and where?
As with some other cancers, retinoblastoma can be caused by the faulty Rb gene, which makes children more prone to bilateral retinoblastoma (affecting both eyes). That is why children born into a family with a history of retinoblastoma ought to be screened regularly till they are five years old. About one out of three cases are genetic, but several DNA mutations develop later in life. The retinoblastomas that are not inherited generally affect one eye. There is no conclusive evidence about what causes retinoblastoma. Nor is there any proven way of preventing retinoblastoma except by prenatal genetic diagnosis, which is recommended when there is a family history of the disease. So, till further research provides any conclusive answers, technically speaking, any child can get retinoblastoma even though statistics say that about one in 15,000 to one in 18,000 live births are diagnosed with it.
Although ocular oncologists work towards a day when they can restore complete vision and save the lives of every child, sometimes the treatment has to be guided by the fact that it is most important to stop the spread of cancer, even if vision cannot be preserved.
If the eye is removed, new techniques ensure implantation of a life-like prosthetic eye identical to the other eye that can even move on volition.
Retinoblastoma, when completely cured, does not often recur later in life. Nor does the treatment leave any significant long-term side effects. Which means, in a couple of years from now, Krish will be packing his books for school.
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