Diagnose the discord

Diagnose the discord

Sitting in a surgical oncologist’s cabin, Shyam Babu (name changed) curses the day he gave in to his old habit of chewing tobacco and consuming alcohol. Just six years ago, the 63-year-old Delhi-based textile businessman had successfully defeated mouth cancer. He now suffers a relapse of the disease. “I am talking with a lot of pain and great difficulty,” says Babu, as he shows marks around his neck caused by radiotherapy.

Tobacco-related cancers, which include the cancer of lip, tongue, mouth, oropharynx, hypopharynx, pharynx, oesophagus, larynx, lung and urinary bladder, have emerged as the biggest cancer group in the country. Though easily preventable, they account for about 30 per cent of the country’s total cancer load. In the Northeast alone, tobacco is responsible for 60 per cent of the cancer cases (see ‘Life in cancer capital’).

This is the finding of the consolidated reports of cancer registries, released by the Indian Council of Medical Research (ICMR) in May. ICMR started setting up cancer registries—27 population-based and 29 hospital-based—in the 1980s under its National Cancer Registry Programme (NCRP). The population-based registries cover less than 10 per cent of the country’s population. Yet, NCRP claims that they reflect the cancer profile of the country fairly well owing to representation of registries from different parts of the country. Based on complex statistical analysis of these divergent data, the reports make another startling observation: cancer cases are rising at a rate much higher than predicted. In 2013, ICMR said there would be 1.32 million new cancer patients in the country by 2020. Based on the latest data, ICMR has now revised its projections to 1.73 million new cancer cases by 2020—this is a 30 per cent jump from its earlier estimate.

Crude rate data shows that Aizawl district has the highest number of cancer cases among both men and women. Thiruvananthapuram, Kollam, Kamrup Urban, Chennai and Mizoram registries have also recorded high number of cancer cases.

The data shows a significant rise in the incidence rates of lung, colon, rectum and prostate cancers among men. Among women, lungs, breast, ovary and corpus uteri cancers are becoming more common (see ‘Mapping the spread’).

Breast cancer, for instance, is the leading form of cancer at 19 of the 27 cancer registries. With 150,000 new cases, breast cancer is projected to become the most common form of the disease in 2016. With 114,000 and 100,000 new cases, lung and cervical cancers are next in the list.

The data also indicates that northeastern states have high incidence rate of cancers. To measure the incidence rate, researchers use a statistical term, age-adjusted rate (AAR). Since cancer incidence is high among the elderly population, AAR makes the incidence rates comparable among different age groups. According to the ICMR reports, Aizawl has the highest AAR for all types of cancer among men. Papumpare in Arunachal Pradesh has the highest AAR for all cancers among women.

The north-eastern states, however, report low incidences of childhood cancer compared to several metropolitan cities. With an AAR of 235.3 per 1 million boys and 152.3 per 1 million girls, Delhi tops the chart in childhood cancer cases. It is followed by Chennai where cases of cancer are high among boys and Thiruvananthapuram where cancer cases are high among girls.

Soumya Swaminathan, director general of ICMR, says the higher numbers reflect improving cancer detection rates, age-related cancers due to increasing life expectancy and higher exposure to cancer-related risk factors.

The reports, however, do not explain why the incidence rate of same cancer is different in different parts of the country. For instance, the annual percentage change in uterine cancer cases in Bengaluru is the highest (5.5), while that in Delhi is 3.6. It does not even explain why the same kind of diet causes two different types of cancer. For example, the diet of people in Mizoram and Nagaland is rich in fermented food and smoked meat and fish. Consumption of tobacco and chewing betel nut is also high among these communities. But while cancer of stomach is high among Mizo men and women, Nagaland registry records a high AAR for cancer of the nasopharynx (which extends from the base of skull to the upper surface of the soft palate).

“This is intriguing and needs to be studied properly,” says Eric Zomawia, principal investigator at Mizoram cancer registry. The data also needs to be analysed in context of new cancer risk factors, such as air pollution and pesticides.

“We need specific studies in our country to understand the factors that contribute to cancer occurrence here,” says A Nandakumar, director-in-charge, National Centre for Disease Informatics & Research, National Cancer Registry Programme in Bengaluru (see ‘Region-specific, organ-specific research needed’).

“The government needs to be a key promoter and supporter of research by funding such initiatives as well as identifying priority areas,” says Arun Kumar Goel, surgical oncologist at Max Super Speciality Hospital in Ghaziabad, Uttar Pradesh, who calls India a “gold mine” for epidemiological studies and specific research on various cancers.

So far, we have depended on Western research for planning treatment, screening and prevention strategies for cancer, says Goel. But it’s time to question these strategies.

For breast cancer, the well-accepted reasons are delayed motherhood, having fewer babies and the practice of avoiding breastfeeding. But is this true for India?

`Region-specific, organ-specific research needed'   The recent cancer registry reports make an interesting observation: unlike the West, where the top five cancer forms remain the same throughout the length and breadth of the country, there is no consistency in cancer patterns in India. The lifestyle and eating habits of people here vary so much that we see different cancers in different parts of the country. These reports peg breast cancer as the number one cancer in India, followed by lung cancer. But the situation is not same everywhere. In the Northeast, cancers of oesophagus, hypopharyngeal (throat and upper throat) and cervix pose a serious threat. In Mizoram's Aizwal district, oesophagus and stomach cancers are increasing at an alarming rate. In Delhi, cases of prostate cancer are increasing by 3-4 per cent every year. Whereas in southern Indian states, particularly in Bengaluru and Chennai, stomach cancer is among the top five types of cancer that require attention. Similarly, cases of colorectal cancers are going up in all urban cities, particularly among men. This difference is due to different lifestyles and eating habits of people. The major reason behind cancer in the Northeast could be high consumption of smoked meat and tobacco. We interacted with 200 high school girls in Meghalaya and found that almost 95 per cent of them were smokers. The high incidence of stomach cancer in Bengaluru and Chennai could be spicy food by predominantly rice-eating population. Increasing cases of colorectal cancer in urban areas can be linked to processed food. But we need studies to determine the causes. It is essential that we have a region-specific and organ-specific approach towards control and prevention of cancer. This exciting profile of India opens up an opportunity for epidemiological studies. But lack of funds to expand the registries to more states or conduct specific studies is a constraint.

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Mapping the spread

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Life in cancer capital

If you have a stomachache, you expect the doctor to prescribe you some pills and ask you to take rest. Instead, he says you have cancer, and things are not the same anymore,” recounts 40-year-old Lalpekhlua (name changed) of Aizawl, who was diagnosed with stomach cancer in 2009. Lalpekhlua used to work as a daily wage labourer. “Now I am too weak to work. So I just sit at home as my wife and five children work day and night to finance my treatment,” says Lalpekhlua. He had a relapse of stomach cancer a few months ago and is undergoing treatment at the Mizoram State Cancer Institute (MSCI) in Zemabawk.

Stomach cancer is the most common form of malignancy among Mizo men, and is followed by oesophagus and lung cancers. Among women, cervix and uteri cancers are common, and are followed by lung and breast cancers. In the last few years, the incidence rates of these and many other forms of cancer have increased at an alarming rate in Mizoram, earning it the distinction of being the “cancer capital” of India.

According to the Three Year Report of Population Based Cancer Registries 2012-14, every year, Mizoram reports 1,552 new cases of cancer; an estimated 711 people succumb to the disease. Between 2012 and 2014, a total of 4,656 people (2,567 men and 2,089 women) were diagnosed with cancer in the state. But why does this small state, with a population of just 1.1 million, witness such a large number of cancer cases?

Jerry L Pautu, who heads the Department of Oncology at MSCI, says heavy consumption of tobacco products and smoked meat could be one of the triggers. Unsafe sex can lead to cervical cancer and studies show that people suffering from HIV/AIDS are more susceptible to lung cancer. “What Mizoram needs is a change of lifestyle whether it is in regards to our consumption habits or otherwise,” says Pautu. But so far, there is no conclusive evidence to show that certain dietary habits and lifestyle can make one susceptible to cancer.

To bring some clarity, four research scholars led by N Senthil Kumar from the Department of Biotechnology in Mizoram University, Aizawl, are studying these deadly group of diseases for four years now in collaboration with doctors such as Pautu. They have evaluated dietary habits of the Mizo people, collected human samples and carried out surveys. Their analysis of DNA extracts and blood and oral swab samples of stomach cancer patients shows that people who regularly consume tuibur (tobacco smoke-infused water is a traditional beverage heavily consumed by the Mizo people), smoked meat, fermented fat and a diet high in salt, are at a high risk of developing stomach cancer.

However, they say, diet is just one among the many factors that can cause cancer. “Research is limited but we are trying our best to find out the root causes and contribute to society in every possible way,” says Freida Lalrohlui, one of the researchers. So far, the team has published 16 papers on the findings.

Several other studies in the past decade consider Mizo diet and lifestyle an important risk factor for the high prevalence of cancer in the state. One study, published in Asian Pacific Journal of Cancer Prevention in 2014, notes that exposure to smoke from cooking oil and wood, and consumption of smoked meat and fish, cooking soda and tobacco could be linked to increased risk of lung cancer among Mizo women.

In May 2006, a study published in Journal of Gastroenterology, concluded that people who consume saum (fermented pork fat) and smoked, dried and salted meat and fish are also at a higher risk of stomach cancer. Incidence of the disease is even higher among those who consume these traditional foods and are infected with Helicobacter pylori—a bacteria that can attack stomach lining and cause ulcer.

Researchers have also found a higher risk of stomach cancer in people smoking meiziol, a local variety of cigarette. In fact, a study published in Cancer Epidemiology, Biomarkers and Prevention in August 2005, shows that tobacco use in any form—smoking or smokeless (tuibur and chewing)—increases the risk of stomach cancer.

More recent studies on cancer in Mizoram are trying to understand the linkage between genes and susceptibility to the disease. One such study, published in Oncogenesis in May this year, looks at the role of tumour suppressor gene p53. Many cancers have been linked to mutations in this gene, including nasopharyngeal cancer. The researchers studied people suffering from this cancer along with healthy people. They found that people with specific mutations in p53 are at a significantly higher risk of developing nasopharyngeal cancer.

Another study published in journal Breast Cancer in April 21, 2015, shows that women with ATPase6 gene are more likely to suffer from breast cancer than those with ATPase8 gene. (See ‘Cancer in the Northeast is intriguing’) Researchers working on cancer in the state say they try their best to raise awareness about the risk factors of cancer by collaborating with doctors and conducting seminars. Their findings and suggestions are often used in cancer prevention programmes.

Eric Zomawia, nodal officer of the state health department’s non-communicable diseases (NCD) wing, says primary prevention is the first important step to combat cancer in Mizoram. This involves making people aware about the risk factors of cancer and the need to lead a healthy lifestyle.

But this is difficult in a state where consumption of smoked meat is a custom to mark celebrations. Smoked meat is served to distinguished guests of the family. Even tobacco consumption is high in the state. “People here start this habit at an early age, which is very sad,” says Pautu.

Even there is not much enthusiasm for secondary prevention programmes, which involve cancer screening tests. “Most patients come here at an advanced stage when little can be done to save their lives,” says R Lalfakzuala, radiation oncologist at MSCI.

“This is not just due to lack of awareness. Complaining of ailments is often considered a sign of weakness among the Mizo people. So they go for check-ups only when the pain gets severe or symptoms become prominent,” says Lalhlen-chhuaki Ralte (name changed), whose sister is being treated for cervical cancer. Her sister was diagnosed with stage three cervical cancer when she was 59 years old.

Of late, the state government has made cancer screening tests, such as Pap smear for females, breast cancer screening and endoscopy, available at the NCD clinics set up at district hospitals and community health centres in six of the eight districts and at the Cancer Care Centre at Lunglei district.

For people like Lalpekhlua who cannot afford cancer treatment, the government has introduced three schemes: One, a cancer patient fund that provides Rs 2 lakh to those below poverty line. Two, a discretionary grant under the health minister that offers up to Rs 1 lakh in aid to the family of a cancer patient whose earning is below Rs 1 lakh. Three, Rashtriya Arogya Nidhi that offers up to Rs 2 lakh in aid. One can also avail benefits under the Central government’s Health Minister Cancer Patient Fund Dr Ambedkar Medical Aid Scheme and Rashtriya Swasthya Bima Yojana.

But infrastructure still remains a problem. MSCI, inaugurated in August 2010, has just 40 beds to house its in-patients and 14 beds for outpatients. While cancer patients can approach other private and government hospitals in the state for surgery or chemotherapy, this is the only hospital that has equipment for radiotherapy. To meet the demand, there are plans to upgrade the institute over the next three years.

MSCI is just five kilometres from Lalpekhlua’s house. But given the patient load at the hospital, it takes him a long time to get an appointment with the oncologist. “Many a time, I think how things were different when I had not developed cancer. If I knew what triggered it, I would have done everything in my capacity to prevent the onset of the disease,” says Lalpekhlua.

`Cancer in the Northeast is intriguing'   I have been with the Aizawl cancer registry for 12 years and it has always showed the highest incidence of the disease in the country. In fact, data from cancer registries in the Northeast suggests that the region has the highest incidence of cancer compared to other parts of the country. This is not due to a single factor. Consider Mizoram. Tobacco is the prime reason for such high prevalence of cancer in the state. All surveys, both national and international, including the National Family Health Survey and the Global Adult Tobacco Survey, show that the use of tobacco, both smoked and smokeless, is high among Mizo men and women. The other factor is diet. Cases of stomach cancer are extremely high in Aizawl and are comparable to those of the highest in the world, such as Japan and Korea. This can be attributed to the smoked and fermented food we eat. We conducted studies, along with the Indian Council of Medical Research, which show that people who smoke or chew tobacco and consume smoked and fermented food are at three to four times higher risk of developing stomach cancer. Then there are those who are genetically or racially predisposed to develop cancer. Similarly, the reason for high incidence of oesophageal cancer at Mizoram, Meghalaya and Kamrup Urban registries is chewing betel nut and tobacco, smoking as well as consuming alcohol. The incidence of the cancer of nasopharynx is very high among both men and women in Nagaland. I am not sure if studies have been conducted to ascertain the reason, but worldwide, smoked food and Epstein– Barr virus (which belongs to the herps family) are implicated in the disease. Then there is another interesting observation: smoked food causes stomach cancer in Mizoram but nasopharyngeal carcinoma in Nagaland. It would be interesting to study this further.

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Long-term cure

@_karnika

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In medical parlance cancer is not usually “cured”, but goes into “remission” when a patient has successfully fought off the disease. To use the same analogy, what can be done to make cancer cases in the country go into remission? Apart from a healthy lifestyle, an exhaustive screening process and awareness among people to get regular checkups can greatly reduce cancer mortality because the disease is usually treatable if detected in early stages.

Trials conducted in Tamil Nadu show that screening could lead to a 25 per cent reduction in cervical cancer incidence and 35 per cent reduction in mortality, according to a study published in The Lancet in 2007. The state government then introduced cervical screening in 2007. Sikkim also introduced state-wide visual screening for cervical cancer in 2010. In March, under orders from Prime Minister Narendra Modi, the Ministry of Health and Family Welfare started developing a screening programme to detect cancers of the breast, cervix and mouth. Whatever shape the final programme takes it is evident that our cancer care infrastructure is ill-equipped to carry out the exercise.

Inadequate infrastructure

The incidence of cancer in India is just one-fourth of what it is in developed countries, says R Swaminathan, head, Department of Epidemiology, Biostatistics and Cancer Registry at Chennai’s Cancer Institute. Still we are hopelessly inadequate in providing care to our cancer patients. A report published by Ernst & Young in 2015 said that India had only one oncologist per 1,600 new cancer patients. The figures for the US and UK are 100 and 400.

And the situation is only going to get worse. According to the latest consolidated cancer registry reports, the projected number of cancer cases in India in 2020 will be more than 1.73 million—a 30 per cent spike from the projection made by the Indian Council of Medical Research (ICMR) in 2013. Our current health infrastructure is just not ready to deal with these numbers. A 2014 study in the Indian Journal of Medical and Paediatric Oncology stated that India had only 0.41 radiotherapy machine per million people as compared to the World Health Organization standard of one machine per million.

Moreover, the treatment facilities are concentrated in big cities, which makes it difficult for people from rural areas to avail treatment. “A city like Meerut, which is not a small place and has a lot of cancer cases, has no medical oncologist. The patients have to travel to Delhi. The government hospitals are overburdened and patients have to wait for months to get treatment, which is unacceptable in a disease like cancer,” says Arun Kumar Goel, surgical oncologist at Max Super Speciality Hospital, Ghaziabad (see ‘Prevention is feasible, cost effective’,). A 2014 analysis in The Lancet Oncology shows that about 60 per cent of special care facilities for cancer are located in the southern and western parts of the country while more than 50 per cent of the population lives in the central and eastern regions. Data published by India’s Atomic Energy Regulatory Board says 26 per cent of the country’s population lives in the eastern parts but only 11 per cent of our radiotherapy facilities are situated there. Jerry L Pautu, who heads the Department of Oncology at Mizoram State Cancer Institute, says he is the only super-specialist in the field of oncology in Mizoram—a state which has the highest cancer rate in the country.

This inadequacy in healthcare is also reflected in our success in treating cancer. Cancer survival is measured as the proportion of cancer patients who are alive five years after diagnosis relative to the five-year survival of people in the general population of the same age and sex. The survival rate for breast cancer in India was 52 per cent and for colorectal cancer was 28 per cent, says Cancer survival in Africa, Asia, and Central America: a population-based study, which was conducted during 1990-2001 and published in The Lancet Oncology in 2010. The figures for China were 82 per cent and 44 per cent, respectively.

So what is stopping the country from strengthening cancer care infrastructure? The most evident reason is lack of funds. According to the World Bank, India’s health spending as a percentage of its gross domestic product fluctuated between 1.2- 1.4 per cent during 2011-14. The figure for Nepal in 2011 was 3.2 per cent and for Bhutan 4.1 per cent.

Moreover, cancer control programmes seem to be losing favour with the government. The National Cancer Control Programme, launched in 1975, was merged into the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Disease and Stroke (NPCDCS) in 2010. “Though the focus of the department of health is on non-communicable diseases, there is no interest in the field of cancer. Allocated funds are allowed to lapse because states do not take the initiative to use them. Since health is a state subject, they have to bear the onus for not taking the initiative,” says Purvish Parikh, director of Precision Oncology, Asian Institute of Oncology, Somaiya Hospital, Mumbai.

Need a unified research agenda

Soumya Swaminathan, director-general of ICMR, says that a unified cancer research agenda with commensurate funding is needed in the country. “There are still many parts of India where good data is not available. Cancer needs to be a notifiable disease and all hospitals dealing with cancer patients must maintain proper records. Further, we need well-planned and coordinated studies to analyse the genetic variability in various forms of cancer in India. The cutting edge of cancer research is understanding the molecular pathways that are affected and targeted treatment regimens, including immunotherapy. Such studies are resource- and time-intensive and need liberal funding,” she adds.

ICMR is trying to form a consortium that can undertake such studies. It also plans to develop implementation research studies in the area of introduction of HPV vaccines for schoolgirls (which reduce the risk of cervical cancer) as well as expanding cancer screening through primary health care centres.

Prevent, screen, treat

Parikh says that the country needs a change in the mindset. “There is a tendency to blame the government for everything. People make no effort to adopt preventive measures into their daily life. No amount of ‘new cancer prevention regime’ is going to work if people do not take the onus of using the information upon themselves,” he explains.

“We need to create a lot of awareness about symptoms to detect cancer at an early stage,” says Aleyamma Mathew, principal investigator, Thiruvananthapuram cancer registry. “It is not economically viable to conduct mass screening programmes. If we can make the population aware of the early symptoms, it will help,” she says.

V Khamo, principal investigator, Nagaland registry, says, “Focus should be on the type of cancer which is more prevalent in a given area.” For instance, colorectal cancers are common in urban centres because of diets that include large quantities of processed food and meat. The risk of cancer is about 11 per cent lower in people who mostly eat foods of plant origin, for instance, vegetables, pulses, unprocessed cereals and grains. The International Agency for Research on Cancer, in October 2015, had said that each 50 g portion of processed meat eaten daily increases the risk of colorectal cancer by 18 per cent. The government can therefore frame policies and initiatives keeping this in mind.

Regulating sale, advertisement and consumption of alcohol, tobacco and tobacco-related products is another way to check cancer. “About 30 per cent of cancers in India are tobacco related—up to 60 per cent in the Northeast. These are all preventable,” says Soumya Swaminathan. “Only 12 per cent of cancers in India are detected at an early stage. A proper screening programme for people attending primary healthcare centres, especially for the three common cancers—oral, breast and cervix—will pay rich dividends,” she says.

`Prevention is feasible, cost effective'   The LATEST Consolidated Cancer Registry Reports for 2012-14 by the Indian Council of Medical Research has once again put the spotlight on the problem of cancer in India. There are several gaps in government policy and health infrastructure, which need to be filled. The most obvious is the shortage of doctors and infrastructure. One of the simplest parameters to gauge the state of cancer treatment infrastructure in an area is the number of radiation units. As per guidelines issued by the World Health Organization and the International Atomic Energy Agency, there should be a minimum of 1,200 radiation machines in India. We have 500 machines in 350 centres. What makes the situation worse is the fact that the treatment facilities are concentrated in and around major cities. There are no national guidelines on cancer screening for asymptomatic people. Population-based screening for breast and cervical cancer in women, for prostate cancer in men and for colorectal cancer in both the sexes is practised in many countries and helps in early diagnosis. We need to develop guidelines and cost-effective strategies for screening of common cancers in India. Investment in prevention of cancer can be another productive strategy, but it will yield results only in the long run. For instance, labeling, sale and advertising of tobacco—the single most common cause of cancer—needs to be better regulated. Other strategies include expanded programme for vaccination against HPV and hepatitis B virus, which can help prevent cervix and liver cancers. We do have National Cancer Control Programme since 1975 and several regional cancer centres have been set up under it. But what is needed is more decentralisation of cancer care facilities to make them more accessible. Lastly, all this cannot be achieved unless there is a quantum jump in funding of cancer care and research. Public and media need to voice their support for this.