A child is not a small adult.
That is a maxim drilled into students of paediatrics in medical schools.
“Everything, right from diagnosis to treatment, is entirely different for a child in comparison with the same disease in an adult,”says Dr Shripad D. Banavali, director, academics, Tata Memorial Centre, Mumbai. “In India if there are a hundred cases of cancer, three to four of them will be childhood cancers as against one or two in the developed world. This is because we have a higher number of children, given our population.”
While cancers in adults are preventable and controllable, in children they are unpreventable but highly curable, say doctors. For example, as Banavali puts it, in a sample of 100 children with cancers, the cure rate is 80-85 per cent. In the age group of 0-18 years, 50 per cent of children with cancer are diagnosed with blood cancer or leukaemia and the rest have solid tumours. Within solid tumours, which can affect any organ, the commonest ones are brain tumours.
“If a child does well for five years post diagnosis, we say that he or she is cured of cancer. Other problems may persist, but they would be cured of cancer,” says Banavali. “This is because there are high chances of a relapse in adults, but not in the case of children. Once cured, it is very rare that a child suffers a relapse later in life.”Now the challenge before experts is to not just cure the child of cancer but to ensure they lead fuller lives. “Earlier, we only bothered about survival because that in itself was a challenge,” says Banavali. “But now, as we progress, we are over that phase. Our success rates are good and now we want to make these children healthy enough to lead fuller lives as adults, without any problems.”
This is why doctors now stick to treatments with the lowest risk. Most cancers of the blood in children do not require radiation and have a tailored treatment protocol, which does not lead to harmful long-term side effects. Radiation is opted for only in high-risk cases or cases where the tumours have grown too big and the cancer is at a later stage. “For childhood cancer to be completely treatable, the diagnosis has to be very early and proper,” says Dr C.P. Raghuram, consultant, paediatrics, haematology and oncology, Aster CMI hospital, Bengaluru. “With advancements in technology, we are now able to identify not just the main type of lymphoma but even its sub-types, and treatments have become super-specialised. We are not just looking at curing paediatric cancers, rather we are looking at risk-certified therapy, which means giving intensive treatment for high-risk cancer and little treatment for low-risk cancers.”
Childhood cancer is a systemic disease, say doctors, which means that by the time it is diagnosed, the cancer has already metastasised to an extent. There has now been a shift in treatment. Instead of performing surgery before chemotherapy, doctors are doing the reverse. A typical treatment plan involves chemotherapy followed by surgery and, if necessary, radiaton. This has changed outcomes—from earlier 10-20 per cent cure rate to now more than 80 per cent, explains Banavali. This way the body is sterilised and the tumour or the disease is not present in different corners. This is also termed as the neoadjuvant treatment.
The symptoms of paediatric cancers are not different from those of other ailments, such as fever, joint pain and headache. However, these symptoms in a normal child will subside within three to five days but not so quickly in a child with cancer. And, that is the first sign that something is serious, says paediatric haemoto-oncologist Dr Gaurav Kharya. In children with persisting headache and vomiting, the most ideal thing to do is get an MRI, not a CT scan, of the brain. “If fever does not subside, then along with a complete blood count, the parent or the doctor has to request the pathologist to check for leukaemia,”says Banavali. “Because now everything is so automated, lab technicians and pathologists do not check a sample under the microscope. Hence, please request them to do it.”Banavali recounts how he has seen patients who had been misdiagnosed and put on anti-TB medication for six months. “And then they come to us with enlarged tumours,”he says. “If a parent observes that a medicine is not working, stop it immediately and suspect something more serious. In children, biopsies provide the most accurate results for proper diagnosis.”
Experts believe that cancer treatment outcome in major centres is close to 75 per cent, but overall in India, it is around 40 per cent only. It is still not very common to have paediatric cancer units in hospitals in India because it is highly labour-intensive and cost-intensive, say doctors. Behind each patient in a hospital’s paediatric oncology unit, there is a team of at least 20 people, including an oncologist, surgeon, radiotherapist, radiologist, surgical pathologist, molecular biologist, anaesthetist, palliative care specialist, psychologist, nursing team, nutritionist and social worker. “This means one patient as against 20 specialists. This makes it very, very labour-intensive and a highly expensive proposition for a hospital to invest in paediatric cancer. It literally requires a village to treat a child with cancer,” says Banavali. Also, every year, 35,000 to 40,000 children are diagnosed with cancer as against 10 lakh to 12 lakh adults, he adds. That is too high an investment for a smaller number of patients. “Yet, we ask the government to invest in infrastructure. If [it is] not increasing the number of centres, at least make those that are already functioning self-sufficient. At present, not every major city has even one fully developed paediatric cancer unit,” says Banavali. The Tata Memorial Hospital treats more than 3,000 children with cancer a year, which, says Banavali, is three times the children treated across the 40 specialised centres in the UK.
According to a paper published in The Lancet Oncology, childhood cancer in India is not prioritised by the National Programme for Prevention and Control of Cancers, Diabetes, Cardiovascular Diseases and Stroke, or by the National Cancer Control Programme of the Union health ministry. Hence, alternative governance and care delivery models have emerged for childhood cancers, which include a mixture of public, private, philanthropic and state actors. Doctors, however, hope that one day they will beat all the odds and childhood cancer will be a thing of the past. u
Sahara Shah, 17, Leukaemia
Sahara was two and a half years old when she was diagnosed with blood cancer. She is now a healthy teenager who hopes to be an actor and dancer and has won several acting and dancing awards. “I am perfectly healthy and fine and have never really felt like a cancer survivor because I never felt sick at all,” says a cheerful Sahara, dressed in a green T-shirt and denims and seated inside her cosy one-bedroom flat in Ambernath, one of Mumbai's satellite towns. The credit for her “incredible treatment and recovery”, she says, goes to her mother Shanti. Her mother left her hometown in Nepal the day Sahara was diagnosed and came to Mumbai's Tata Memorial Hospital with barely 01 lakh and an identity card. Shanti had to make that journey alone as her husband, who worked in the Middle East, had gone missing around the same time. “It was the mother’s persistence that has paid off,”says Banavali.
Shanti would travel close to 100km from Ambernath to Mumbai and back for Sahara’s chemotherapy sessions. “It started with a mild but persistent fever, and the doctors kept misdiagnosing,” says Shanti. A biopsy concluded that Sahara had acute lymphocytic leukaemia (ALL), a cancer of the blood and bone marrow. The disease progresses very fast and creates immature blood cells rather than mature ones. A cell's DNA contains a working manual, with instructions to grow at a set rate and to die at a set time. In ALL, the mutations tell the bone marrow cell to continue growing and dividing. When that happens, the blood cell production goes out of control. The bone marrow produces immature cells that develop into leukaemic white blood cells called lymphoblasts. ALL, says Banavali, is the most common childhood cancer. “But the treatment is a tailored one and hence the cure rates are as high as 90 per cent with no long-term side effects,” he adds.
Banavali says that Sahara was a low-risk patient as she came in time for treatment. She underwent chemotherapy cycles for six months on alternate days, and thereafter oral chemotherapy for two and a half years. “Post that, she took a vaccine once a month for nine months and since then she goes to hospital for regular checkups as a cancer survivor,” says Shanti, who works as a counsellor for parents of children with cancer at Sion hospital.
Rudransh Sharma, 12, Burkitt lymphoma
In September 2020, Rudransh began complaining of abdominal pain. A family physician prescribed medicines that provided temporary relief. But the family knew something was wrong. Rudransh, 12, would take two hours to finish a meal and would often complain of stomach ache.
Within the next two months though, he had to be taken to hospital; he had a bloated stomach and his eyes were “very red”. The hospital referred him to a gastrointestinal specialist. On November 16, an ultrasound and CT scan revealed a swelling in the pancreas, and the specialist diagnosed it as pancreatitis (inflamed pancreas). The treatment involved taking two injections every day. But the pain persisted.
Rudransh was then taken to Medanta-The Medicity in Gurugram. Gastroenterologist Dr Ranbeer Sood suggested that Rudransh be admitted immediately and he ordered an MRI and biopsy. That is when they found that Rudransh was suffering from lymphoma, a cancer in the body's infection-fighting cells of the immune system called lymphocytes, which are present in the lymph nodes, spleen, thymus, bone marrow and other parts. In lymphoma, these lymphocytes change and grow “at a very, very rapid rate, so much so that they double up in every 24 hours”, says Kharya, who treated Rudransh. “The diagnosis of cancer had left us shocked and shaken,” says Rudransh’s father Dinkar Sharma, a London School of Economics graduate who works with a leading government bank in Alwar, Rajasthan. “The doctors began talking about 10-year survival rates, which was too disturbing and frightening. We lost our sleep and appetite. I remember how my wife and I would cry, fearing we might lose our son. We consulted ayurveda, homeopathy and what not to see if his cancer could be cured. We even took to palmistry and would read his palm while he was asleep to check if he had a long lifespan. We did not tell him that he had cancer. Just that he needs to take proper medication for his tumour to go away.”
The PET scan, says Dinkar, revealed that the tumour, an 8cmx3cm oval-shaped ball, was in the abdomen. It was big enough to suppress other organs, including the diaphragm and lungs. His cancer, fortunately, had not spread to other organs. “At the time we saw Rudransh, the disease was taking over him progressively,” says Kharya. “He had lost almost 12kg in a month, was not able to eat well, had abdominal pain and distension, nausea and vomiting.”
Rudransh, says Kharya, wrongly received partial treatment for intestinal tuberculosis, before a biopsy confirmed it to be Burkitt lymphoma. “It is a form of non-Hodgkins lymphoma in which cancer starts in the immune cells called B-cells,” he says. “It is associated with impaired immunity and is rapidly fatal, if left untreated. He was at the intermediate stage when he was brought to us, but the disease burden was huge. He was fed through a tube initially and then he was given two cycles of chemotherapy.”
After the second cycle, Rudransh's symptoms resolved significantly; the abdominal lump disappeared and his appetite improved. Till date, Rudransh has received five cycles of chemo. He would need two more cycles to complete the treatment. But the side effects of chemo were unbearable, even though they were considerably reduced by drinking almost seven litres of water every day. “He had acute pain in the jaw, so much so that at times he could not even drink water but then he persisted,” recalls Dinkar.
Burkitt lymphoma, if treated aggressively, can have a very good outcome, explains Kharya. The success rate for stage one and stage two Burkitt lymphoma is more than 95 per cent, and 80-85 per cent for stage three. So, early detection and treatment are the key for cure. When Dinkar noticed that his son was perspiring profusely at night, causing bedsheets and his clothes to turn damp, suffering from a loss of appetite with frequent vomiting and intense abdominal pain, he wasted no time in consulting doctors. “It was only later that we learnt the cause behind frequent vomiting: the food was unable to pass from the stomach into the intestines because of the tumour,” said Dinkar.
At present, Rudransh, who will soon be in class eight, weighs 35kg, has more alkaline food, does his daily pranayams and attends his online classes regularly. “He is a fantastic football player and sprinter and gets full marks in studies, too,” says Dinkar. “We cannot wait to finish the treatment so that Rudransh can come out of the shadow of cancer and walk into the sun, hale and hearty.”
Samira Haryan, 14, Brain tumour
Samira was all of ten when she was diagnosed with brain tumour in 2017. Four years later, the fear of a relapse still looms large in the Haryan household. Every time Samira complains of headache, her father Deepak Haryan wonders if “it has come back to haunt the family again”.
Samira, says Deepak, had always been a healthy child. She would eat, play, study and do all the things that normal kids her age would do. The problem began when she started getting irritated with the tubelight flickering in the house. She also showed signs of fatigue and drowsiness. “We thought she needed spectacles, but the optometrist found that her entire optic nerve had turned red and asked us to immediately see an eye specialist. The latter, in turn, suggested an MRI, which pointed to a brain tumour.”
Samira’s tumour was surgically removed. “Things were normal for a few days, but soon the problems resurfaced,” recalls Deepak. Six months after the surgery, Samira began to vomit frequently and “her eyes showed a pale white film that was very disturbing to see,” says Deepak. Also, her pupils would dilate on their own at times. A CT scan showed an accumulation of water in the part of her brain where the tumour once resided. Medically, it is called hydrocephalus—build-up of cerebrospinal fluid in the cavities of the brain, thereby causing increased pressure inside the skull. It leads to headaches, double vision and poor balance. This necessitated the surgical placement of a hollow tube or shunt inside the brain to help drain the fluid and redirect it to another location in the body where it could be reabsorbed. However, in another six months, the symptoms came back. “Frequent vomiting, profuse sweating and seizures became a part of Samira’s life. Sometimes it seemed as though she had no life inside of her; she looked so pale and weak,” says Deepak.
Another MRI was done, this time at Mumbai's Jaslok hospital under the supervision of Dr Sudheer Ambekar, a neurosurgeon. “The MRI showed that the shunt had migrated from its original position and that was causing a fluid accumulation in the brain, which can eventually lead to death if not treated in time,” says Ambekar. “The cause for the dislocation is not known and unless it gets infected, the shunt does not have to be replaced.”Another surgery was done to relocate the shunt to its original position.
As of now, Samira is back to normal, except for “a lasting weakness in limbs and a slight physical imbalance which requires her to be held when crossing the roads”. She excels at her studies. While she cannot take up outdoor sports because of her health, she does enjoy indoor games. She is playful and chatty but has grown fearful in the past few years, says Deepak. “The slightest of headaches drives her into a tizzy,” he says. “She has dreadful thoughts of hospital visits and MRI scans. She considers herself to be a sick child and hates herself for it.” Post the last surgery, she has had no complaints. “Yet we are prepared for any emergency, because going by our experience, issues are seen after long gaps of time,” says Deepak.
The next MRI is due in May; the last one was done a year and a half ago. “She has to be tested on a regular basis,” says Ambekar. “Every two to three years, she will have to get an MRI done to observe if the shunt is in its right place.”
Arnav Tiwari, 4, Blood cancer
Last August, Arnav Tiwari, 4, was brought to Mumbai from Shahdol in Madhya Pradesh for treatment of blood cancer. “He just kept getting mild fever on and off and was losing weight at a rapid pace,” says his mother. “Doctors there diagnosed him for infections. But when his haemoglobin levels fell below three, they sensed something was wrong. We were then referred to Tata hospital, where he was diagnosed with leukaemia.”
The family has been staying in Mumbai for the last six months under the care provided by Tata's Impact Foundation. Arnav has undergone three chemotherapy cycles till now and has one more to go. The little boy playfully jumps into his mother's lap and nudges her to play with him. His eyes twinkle each time he is spoken to. He listens carefully to the interview and volunteers to narrate little anecdotes.
Two months ago, Arnav caught Covid-19. His mother and father, who works in a shop in Shahdol, however, tested negative. Arnav has now tested negative, too. “Previously, we were also unaware as to what Covid-19 would do in cancer patients,” says paediatric oncologist Dr Girish Chinnaswamy. “We were admitting and isolating them, and delaying chemotherapy. But then we learnt that delaying chemo would be wrong. If, in a week's time, they showed no major problems, we would start the chemo in the Covid-19 ward itself. Many patients were treated this way because cancer is more dangerous than Covid-19 and we cannot afford to let the disease relapse.”
Shubham Kumar Prajapat, one-and-a-half years Retinoblastoma
When he was hardly a few months old, Shubham's parents could sense that something was amiss in one of his eyes. “It appeared as if there was a white colour in the centre of the eye. It shone bright. At times, it seemed that he was cross-eyed,” says Shubham's father Bindeshwar, 29, who works as a farmer in Aurangabad, Bihar.
Initially, eye specialists back home gave eye drops, to be administered four times a day for 20 days. “That made his condition worse,” says Bindeshwar. “The left eye completely closed after that.”
The Prajapats, who have two daughters, too, waited desperately for the lockdown to be lifted. Once they could travel, they took Shubham to the Tata Medical Center in Kolkata, where he was diagnosed with retinoblastoma. They were then referred to the centre in Nagpur and finally to the Tata hospital in Mumbai.
Doctors say retinoblastoma is the commonest eye cancer in children. It usually develops in early childhood, typically before the age of five, and is seen in both eyes. There can also be multiple tumours in one eye. It develops in the retina, which is located at the back of the eye and detects light and colour. “If treated early, this cancer has a cure rate of more than 95 per cent with long-term survival. But the problem is that in India most of these cases are detected late,” says Chinnaswamy. “This also means that if the tumour is within the eyeball, the cure rate is very high. But if the tumour spreads to the surrounding surface, then the cure rate drops by 30 per cent. And if it goes to the brain, the outcome is zero.”
Tragically, by the time Shubham was brought to the hospital, his left eye that had closed was beyond repair. It was surgically removed and replaced with an artificial, cosmetic, non-functional eye. In the meantime, the right eye, too, got infected and required chemotherapy. Unlike the left eye though, this one was saved in time. Shubham has undergone four chemotherapy cycles for his right eye, and is on the waitlist for another one.
It is only when you look closely that you notice the artificial eye. Shubham, however, remains oblivious to the change in him. During the interview, he moves around, touches whatever he can lay his hands on, explores, smiles and at times does make eye contact. “He is very understanding, thoughtful and a sharp listener,” says Bindeshwar. He asks his son to clap, high five and fist bump and the boy happily obliges.
“The younger the child the easier it is to treat as the child doesn't know what is happening,” says Chinnaswamy. “They don't come with an anxiety component and are more worried about injections rather than the disease itself. So, if they feel fine from within, even when suffering from cancer, they will be playing around.” It is the parents who are more anxious and scared. “Because they feel guilty—they think either they are responsible for their child getting cancer or something is wrong with them,” says Chinnaswamy. “We now have a separate programme to counsel parents.”
Cancer of the eye is not just a medical but a social issue in India, explains Chinnaswamy. “Many a time when the tumour is within the eye, it involves the removal of the eyeball and its replacement with a cosmetic eye,” he says. “But that is to be done if the child has to survive for a lifetime. There is a stigma attached to this and parents do not proceed with the treatment, especially in the case of a girl child.”
Cases of retinoblastoma, he says, are usually seen in patients from lower income backgrounds. If cancer occurs in both eyes, it is due to a gene defect. In a non-genetic one, it is usually a single tumour in one eye. “In Shubham’s case, we tried to conserve one eye using chemotherapy to shrink the small tumours in it and burnt them using laser and cryotherapy,” says Chinnaswamy.
Intra-arterial chemotherapy is the latest technology used to deliver concentrated doses of cancer-killing medicine directly to the affected area of the eye. The dose is released into the ophthalmic artery, the primary blood supply at the back of the eye. “This is done when both eyes are involved, as we can manage to salvage at least one eye,” says Chinnaswamy. “It has also helped us considerably reduce the number of eyeball removals, and that is why fewer people are now abandoning the treatment for retinoblastoma.”