DNA Conversations: Cancer- It is not as terrifying as you think

DNA: Cancer is a dreaded word. It’s a word that fills everyone with anxiety. And when we look at the numbers, there are times we believe cancer is not as serious as other diseases that kill more swiftly. So, is there some reason why cancer frightens people?

Dr. Gupta: Well, the reason is partly historical…Cancer has been a very-difficult-to-treat disease for a long period of time. And the reason for that has been that, historically, most patients have been presented to the healthcare system when they were in an advanced stage. Also, surgery is the oldest modality of treatment for cancer. It goes back into antiquity, perhaps, thousands of years. But most patients have not been amenable to surgery, historically speaking. That has changed in the past fifty years.

Chemotherapy, radiation therapy are of more recent origin, about fifty to hundred years old. So a large fraction of patients with cancer have historically not been in a position to be cured of their disease, and their survival has ranged from a few months to a few years. Cancer has been such a dreaded disease because it is associated with the inevitability of death, which I must say has changed in the most recent past. And, therefore, the outlook should not be as dreaded as it always has been. And you were absolutely spot on when you said that somebody in advanced heart failure has as bad a prognosis as cancer, but the word cancer is still frightening.

Dr. Saikia: Yes. The first thing we face – a lot of people coming in, especially educated people, coming into our offices. Sometimes, they come in even before the patients do. Relatives – they come and say that “We have just come in to tell you, please don’t tell him that he is suffering from cancer.”

I think that’s where there's a big problem. We need to really open up and talk. If we cannot talk to the person who is suffering from a disease, how do you offer them right investigations and right treatment? We need to talk to them.

In the U.K., now at this moment, their statistics show that 50% of the people suffering from cancer are alive even after 10 years. By 2050, they project, people will not be dying from cancer. But it’s still a dreaded disease in the country, undoubtedly, because the moment it is diagnosed, people feel that time is limited.

Dr. Menon: Yes. It’s like the bottom line is always that cancer is equated with death.

DNA: Life too comes with an expiry date.

Dr. Menon: There are actually not that many conditions in medical sciences which can be cured completely. And I would always tell them that cancer is one among them, which can be cured completely. provided they are identified in time; they’ve come to the physician in time; and they come to the right people on time.

In our Bible, which is Harrison’s Book of Internal Medicine, in the first chapter on oncology, one thing that is mentioned is – why is a patient who is confronted with the diagnosis of aortic stenosis, which is a condition of the heart, not so perturbed; and why is he so perturbed when it is revealed to him that he has cancer. However, a patient with aortic stenosis has lesser time than a patient that has cancer. So it is just a perception that cancer is always equated with death.

But people also have an idea that there is a lot of suffering associated with cancer. There is a lot of pain associated with it. And, lately, there is a lot of expense associated with treating cancer. For any patient diagnosed with cancer, there are many ramifications in terms of diagnosis, treatment, and living with cancer, because many of the cancers have become sort of chronic diseases.

Also, there is a need for specialised care. I mean the support, the family support and also the strain, that is felt by the care-giver. There are so many things associated with cancer. And once you are a cancer patient, there is always a chance of a relapse. All these things play on the mind of the patient. So it’s just not one aspect that the patient has to go through.

Dr. Das: This kind of a stigma is attached to the disease because earlier very few of the patients suffering from any kind of cancer could survive. But today, probably in another few years, we will be curing more than 90% of cancers.

I treat haematological malignancies and more than 70-80% of patients survive. More than 5-10% get completely cured. So that’s an excellent thing. But it has not seeped into people’s minds. Another thing is, many of them get very scared that this is a kind of dreaded disease because either they cannot afford the treatment, or some of them cannot afford complete diagnosis.

The main fear is that if I am from a rural or a small city background, I’ll not be able to afford my treatment. Once they know that it is treatable and can be treated, can be cured and that majority of them will get cured, probably that fear will go, and gradually it is going away. Maybe, few years ahead, we’ll see that this stigma around cancer should go away entirely.

DNA: Is this stigma peculiar only to India or is it so around the whole world?

Dr. Saikia: It’s not so in western countries. In the Asian context, I think it’s different. In the whole subcontinent, I think, we have similar ideas. And we don’t know much about what they talk about in a bigger country like China.  

Dr. Gupta: China, from whatever little I know, is also largely like India, but, there is no stigma attached in the sense that people will not want to be segregated at the prospect of them being identified as patients of cancer. Nevertheless, cancer still is a special disease even in the west. And the largest chunk of funding for healthcare research actually goes to cancer. In the US, of all the National Institutes of Health budget, the National Cancer Institute consumes the largest chunk of research funding.

So cancer is still a special disease all over the world, especially because the incidence of cancer is much higher in western countries than it is here.

DNA: Is the stigma about cancer the same as was with tuberculosis, say fifty years ago?

Dr. Gupta: You are absolutely spot-on. In fact, the stigma for tuberculosis was such that you know people refused to sit in the same room with a TB patient. Over the past few years this changed, though, now, unfortunately, there is again a resurgence of drug-resistant tuberculosis. But the stigma around tuberculosis has largely gone away in the past 10 or 20 years.

DNA: In terms of numbers, how big is cancer in the country?

Dr. Saikia: For cancer as a whole, incidence in India is definitely lower than in the West. But there are certain types of cancer– like that in the head and neck area – that are more prevalent in India.

Some cancers are peculiar to the Indian subcontinent. Cancer of the mouth, throat and, of course, the aesophagus are very prominent in India. They account for more than 30% of all cancers here. But it’s different than in western countries. In western countries, it is mainly the cancers of the large intestine and, of course lungs.

Dr. Menon: If you look at the incidence of cancer in India, it is almost 1 million new cases a year out of the population of 1.2 billion. So, it’s a huge number, but a small percentage of the total population.

DNA: Do you find these numbers increasing because of lifestyle or do you find that the numbers are large because they’re detecting more cases now?

Dr. Menon: Cancer, let us accept, is the disease of the older age group. As you grow older, you get various types of cancers. Life expectancy is also on the rise. So, you might find that trend also coming into play – in terms of the increasing incidence of other cancers in India too. There are certain specifics related to lifestyle and also in terms of addiction, especially tobacco use etc, which results in significant proportion of head and neck cancers or cancers of the stomach.

Dr. Saikia: Lifestyle actually contributes to two-third of the cancers.

Dr. Das: Various studies say around 5 to 10% of cancer-stricken persons actually carry the gene in their family. So, it is a miniscule amount. So, family history of cancer is for specific reasons at certain times. It’s not always relevant. And then, of course, there are certain lifestyles due to which in some regions, oral cancers are more prevalent. It’s a known fact that chewing or smoking tobacco, is one of the most important carcinogens which give rise to a large number of cancers.

Dr. Gupta: One must realise when one is talking of cancer that one can’t have a mathematical two plus two is equal to four formula, because cancer is multi-factorial. And there are many co-factors that work together to cause cancer in one particular person. So you might know of Angelina Jolie who had both her breasts removed because she carried a mutation in a gene called BRCA. Even when BRCA is mutated, not all women who have BRCA mutation develop a breast cancer. However, a considerable fraction, more than 50%, do. They are at a higher risk of developing that, which means that the gene is necessary, but not sufficient to cause the cancer. Also, there are a variety of other things. For example, it can be other carcinogens, it can be tobacco. It can be obesity. It can be lack of physical activity, it can be some infections. So there can be a variety of other co-factors that will lead to the causation of cancer.

Dr. Menon: This is just like saying, it’s a jigsaw puzzle. For a machine to function you have to have various components coming together before it can actually start functioning and over here the functioning is the manifestation of cancer. That is why you cannot have one way to treat the cancer, you need to have a multi-modality approach to actually treat the cancer as also to prevent it.

DNA: Is it because more people are reporting the fact that they have cancer that we feel that the spread of cancer is rampant? Or is it that the changing lifestyles are actually responsible for increasing incidence of cancer?

Dr. Gupta: You can by no stretch of imagination call the incidence of cancer rampant. Newspapers are full of it on one day or the other, Breast Cancer Day, World Cancer Day or whatever else you have. But more people are aware of it, therefore, everybody is more aware of it, but it is not the case that cancer is rampant in India. The incidence of cancer is low in our country.

And let me say, let me say that many cancers are gradually increasing in incidence, but many others are gradually decreasing in incidence. And the classic example of that, for example, if you take a city like Bombay, the incidence of breast cancer especially in women over the age of 50 years has gradually increased, over the past 30 years. Tata Memorial Hospital (TMH) analyzed the data from the Mumbai's Cancer Registry. It's increase is on an average of about 1.5% per year from 1973 to 2003.

At the same time, cervical cancer has declined in Mumbai by an average of about 1.3% or 1.4% every year for those 30 years. In the 1970s, the incidence of cervical cancer was 35 per 100,000. Today in Mumbai, it is about 11 or 12 per 100,000. It is probably everything to do with better hygiene, better nutrition and you know, women having changing fertility patterns. They are having children at an older age. They are marrying later. Their sexual practices have probably changed. 

Dr. Das: Maybe they are just an addition to our records rather than increase in numbers. For instance, I may come across a child with leukemia, and I am not surprised when the mother tells me that nobody in the three villages nearby has suffered from blood cancer. This is not so for diabetes or any heart disease. So we have to still believe that the incidence is quite low. Maybe if you are in a metro you are attracting the patients from various parts of the country. Thus with a population of 120 crore, the numbers you come across in a city might be big.

Dr. Gupta: The incidence of breast cancer, adjusted for the age structure, is 10 per 100,000 women in rural Maharashtra, in Barshi. The data is from a very well-run population-based cancer registry. In Bombay, it is about 30 or 32. In most parts of the west, in Denmark, in Sweden, in U.S., in Connecticut, in Florence, it is about 90 per 100,000.

Interestingly, for Indian women who migrate to the U.S. it is about 60 per 100,000. So the ratio is 1:3:9. One in rural India, three in urban India, nine in the western world. And for Indian women who migrate there, it is between our urban women and theirs.

Dr. Menon: There are environmental factors and diet and so many things that impact the incidence of cancer.  Why do people in the western countries have more of colo-rectal cancers? That has got to do with the kind of diet that they take. We have our own set of problems with specific forms of cancers which we have to deal with. For example, if you look in Northern India, we have a huge problem with gall bladder cancers.

DNA: Can you throw some light on curability? How the situation has improved –  numbers, percentages etc?

Dr. Menon: When I talk to a layman, I would say that it is better to look at the situation as a group of three  – one-third, one-third, one-third. The first one-third is a group I can completely cure, a patient does not have to worry about the cancer subsequently. The second one-third, I can beautifully control the cancer and the patient can live with it. And the last group is one where I probably cannot do much, but I can certainly give him a good quality of life in terms of whatever we can implement for the limited time that he has left.

So, if you are able to understand this particular aspect and able to focus on treatment for the two-thirds that we have, then we would say that, we have a huge chunk of population of cancer patients, where we can make a huge difference in terms of their outcomes.

But if you want to do that, there needs to be a lot of awareness in the society to be able to come forward to get their early treatment. For that to happen, we need to have even the medical fraternity geared up, and so the people who are not essentially oncologists are trained in the field, or understand the concept of oncology to a certain extent so that they can recognise the symptoms and could bring it to the attention of the specialist in the field.

Dr. Saikia: Cancer is curable if detected early. So early diagnosis, early treatment, a proper treatment – a single modality or combined modality – will cure a majority of cases. But we are still struggling with advanced cancer. There is no question about it. And in our country, even today, lots of patients do come to hospitals where facilities are available, after much delay.  We are continuing to struggle in the country.

DNA: Do you find the number of cases being cured increasing in terms of percentages, or do you find that the percentage remains the same because of newer cancers being discovered?

Dr. Das: As of today, most blood cancers are completely curable. Almost 80% of blood cancers can be cured. So that’s the kind of result we are achieving.  That’s because of better medication, better supportive care and more and more families coming and subjecting themselves to complete treatment. But one big problem is that this kind of treatment is prolonged and it requires a lot of money.

Take Acute Lymphoblastic Leukemia that commonly occurs in childhood: 40 years ago the cure rate was less than 10%, today it is more than 90%. During the last 10 years, I have seen only 1% of patients dying out of Chronic Myeloid Leukemia (CML) while in every clinic, we see more than 40- 50% CML, because they are on treatment. I will not say that they are fully cured, but they are on continuous treatment, just like diabetics or hypertension.

Dr. Menon: Let’s take the example of leukemia, the trends of which have significantly changed in the last two decades or so. We are able to more clearly identify those leukemias that can be completely cured and we are able to identify those leukemias when you can’t do much. And fortunately many of the paediatric leukemias fall in the category where you can actually cure them, because they have the characteristics which will determine whether they will do well if treated in the proper way, following the right schedule and in the right hands. Even in chronic myeloid leukemia, we are able to target the pathological process that determines how the disease will grow. So we are able to block that process completely, thereby, being able to bring about some normalcy.

Dr. Gupta: If you talk about solid cancers, again you know, the percentage of patients with breast cancer who are getting cured today is close to about 70 to 80%. It was only about 40 to 50% until two decades ago. The percentage of patients with cervix cancer who are getting cured, the commonest malignancy in Indian women, is now again close to about 60 to 70%. It was 30%, until not so long ago. If you look at the number of patients with head and neck cancer who are getting cured of their disease – that is also now about 60 to 70%. That was much lower earlier.

And, you know, incidentally, all of these are surface malignancies. They occur on the surface of the body, so they are somewhat more susceptible to earlier detection. They have had a substantially increased cure rate. Unfortunately the same cannot be said for some others, such as pancreatic or gall bladder or even lung cancer. Lung cancer remains a problem; despite all the advances it is a rather difficult disease to treat. The best thing about lung cancer is to prevent it by reducing the consumption of tobacco.

Dr. Saikia: But, you know, it very important to talk about dignity. I want to die with dignity someday. Death – that’s the only truth that we have, once we are born. It’s very important because when the cancer is very advanced, you can’t do much about it with presently available treatment. Lung cancer or pancreatic cancer is extremely painful. You’re so frail that you can’t eat. And ovarian cancer – when it manifests itself – your bowel is obstructed. It’s a very painful death.

I think about what people should do. Should they spend time in the hospitals? Should they spend time in the home or in hospices? Unfortunately there is no hospice culture in India. Somehow more funding has to come in from agencies, how to spend more money for comfort care? Say, at the end of life, you have few months to live and I think the required funding is extremely low. People don’t want to open it, because it’s a very difficult area to open. You need to have a different kind of mindset to open that kind of relative care. But it’s important. People- family- they take patients to the hospital and as oncologists we admit them, put a line in, give antibiotics, give painkillers, give blood transplants. It's okay to an extent, but that should not be limitless. The need for hospices is immense.

Dr. Gupta: I would like to talk about the book by Atul Gawande who is a practicing surgeon at Harvard. And about the way his father, who was also a surgeon, died. It talks about how the dignity of dying actually is a very critical aspect. So the important thing I feel, with a lot of concern, is that even the medical fraternity does not know when to stop.

There is an important aspect of discussing with the patient and relatives about what to expect from the treatment and when you doing nothing is better than actually offering treatment. I’ve come across several situations where you cannot do much. When you talk to them, you give them time – tell them, explain to them what to expect, and what your treatment is actually going to do. They are more accepting of the situation once they have been well-informed.

DNA: The treatment of cancer is very expensive; would it be right to assume that the maximum deaths in cancer take place among the poor because they can’t afford treatment? If it is an expensive disease to treat, what are the answers? Does it fall in the realm of altering the policy?

Dr. Gupta: Very expensive treatments form only a minority, and have made only a small impact relatively on the outcome of cancer. The treatment for the large majority of cancer that is maximally effective is good surgery.

If good surgery is done in a localised cancer followed by – for example – radiation and routine chemotherapy, that will save the maximum number of lives. Good surgery, good radiation and routine chemotherapy should not be very expensive.

However, there is a lack of access to these routine methods of treatment for a large fraction of our population. The very horrendously expensive treatments, let me reiterate, barring in a few situations, have made only a minimal impact on the eventual outcome of cancer. One is a drug for CM, which has made a dramatic impact. Another is a drug for lymphomas or B-cell lymphomas. It too has made a dramatic impact. And the third is a drug for breast cancer. That has also made a large impact.

But, if you look at many other situations, most expensive drugs end up doing is a little bit, add a few months, a few weeks, here and there.

But the big problem is lack of access to care. That is a problem of healthcare delivery. It is not a question of finances and resources.

The problem is that there aren’t enough multidisciplinary institutions, there aren’t enough oncologists, there aren’t enough surgical oncologists, there aren’t enough radiation machines, there aren’t enough radiation oncologists and most importantly, there aren’t enough well-trained pathologists, who will give the correct diagnosis of pathology, which is absolutely the backdrop of any properly implementable cancer treatment program.

DNA: Pathology? In spite of new machines, computerisation, automation?

Dr. Gupta: Pathology remains an art. A good pathologist sitting behind the microscope is absolutely essential for the delivery of top class oncology healthcare. Unfortunately, pathology is hugely neglected; you have these islands of excellence in Bombay and Delhi, where everybody wants to send their blocks and slides to. But, we need to have good pathology all over India. Every single patient who is diagnosed with cancer should have access to good quality pathology. And that is the only way that we can improve the delivery of healthcare to these patients.

So we need more manpower including pathologists and also more multidisciplinary institutions in the public sector outside of the metropolitan cities. It is the need of the hour. It’s a question of organisation and it can be done. When the tsunami strikes you cannot not eat a US$100,000 cheque or cover yourself with notes worth a lakh rupees. You need somebody to deliver a blanket or to offer food service. These days we are awash with donors who are willing to give you money, but the problem is of organisation, delivery and of setting up systems, whereby, standardised evidence-based treatment can be delivered to people all over India. That is a problem.

Dr. Saikia: The private sector caters to only 1-4% of the population. I think the economics of cancer treatment is very complex. Where does the money come from? We are talking about an expensive graph.
Why has it happened is something that must be looked into.  But the more critical issue for most patients is – where will the money come for the treatment? From your pocket? From insurance? Or from your employer? That’s not very clear.

Dr. Das: The pharma industry has a big role to play, because when it develops a drug, these are expensive. Newer drugs are going to get more and more expensive. When such cancers used to relapse, six months ago, we would have to go home. But now we can talk to them and tell them – there is a new drug available which if you give – administer one cycle – it could cost you about $90,000.

Dr. Gupta: The problem is that of poor outcomes in our country.
A woman who is sitting in a small town in Maharashtra has a third-stage breast cancer. The correct treatment for that is to give chemotherapy first followed by surgery. But if that decision-making is wrong, if somebody operates on her first, the outcome may be completely compromised.

Similarly, for an advanced head and neck cancer, if the correct treatment is to use radiation plus chemotherapy simultaneously, and somebody did something else, that would be disastrous. So that is the problem if you don’t have enough trained people to be able to take the correct evidence-based decision.

For example, there is one type of breast cancer that is called estrogen receptor positive breast cancer. Suppose, a woman who is diagnosed with breast cancer has not had the specific test done and is prescribed the drug Tamoxifen – it costs only a few rupees a tablet – then the outcome is poor.

So before we reach the situation where treatments worth hundreds of thousands of dollars are delivered, we need our decision-making to be correct. We need good pathology. And we need the people to take the correct decision for giving the right treatment at the correct stage of cancer.

Dr. Saikia: Through knowledge, education and ethical practice of medicine, many lives can be saved.

Dr. Gupta: Currently, our healthcare community is not adequately trained.  So you know we need doctors. We need healthcare professionals. We need nurses. We need counselors. We need all of those to be adequately trained and in sufficient numbers to be able to deliver this.

Dr. Das: I work in an Armed Forces-run hospital. In the Armed Forces for example, nothing is charged for the treatment.

Initially, when we started, there were certain drugs which were a little expensive. There is a lot of resistance in the armed forces, so as to why you want to divert so much portion of your money to all that treatment. Then we had to convince them that this is a curable disease wherein most of them will survive and get cured. The earlier impression was that you are just wasting your money on cancer patients and that none of them will survive.
Once they saw that that 60% - 70% are surviving, they were more positive to the prospect of investing in treatment. We get all the finances including the medication to treat all our serving personals, their families and retired people free of cost, as it is run under government-sector.

DNA: The armed forces medical services are the best-of-breed.  But look at the public sector hospitals in the non-armed forces sector. They have been allowed to degrade day-by-day, month-by month, year-by-year.

Dr. Menon: This is very disturbing. If you go to the West, for example, all the medical schools and the universities are the seat of the best research, and have the best treatment that can be offered and the best personnel who deal with specific conditions and things.

Unfortunately that is the reverse in India. All the universities and teaching institutions – i.e. medical colleges – are on the decline. Cancer is one of the big sufferers as far as this is concerned.

You look at our situation at Tata hospital, where I work. Patients come to Tata Hospital because nobody will touch them elsewhere. What will they do? They come after travelling for hundreds of kilometers to Tata Hospital and live on the footpath, trying to get their treatment done. And what is the result? We are overwhelmed with the entire load and we cannot handle this. Our system is breaking at its seams.

Dr. Saikia: Healthcare has to be decentralised. More and more institutions have to come to the periphery of this country and the government has to see that metros are not the only places where such kind of diseases can be treated. It has to be decentralised.

Dr. Gupta: The government too has made several efforts to actually improve the situation. Until very recently, we were training only two medical oncologists per year. Now we are training about 15 medical oncologists per year at Tata Hospital and this model of training is being replicated across the country in other institutes too.

The outlay for cancer control has increased by an order of magnitude compared to the previous five-year plan.  While it used to be Rs 400 or 300 crores earlier, it has jumped to Rs 2,500 crores and in the current one it is much more than that.

Also, we have a robust national cancer registration program. It doesn’t cover the entire population –  only a small fraction – but where it exists, there is reasonably good data, so that the numbers we are telling you are not from the top of our heads. It is a nicely enumerated with the population base which is more than what can be said for most countries all over the world. We have a base in medical colleges and in regional cancer centers, which are the government hospitals.

All that needs to be done is to ensure that multi-disciplinary care, radiation oncology, surgical oncology, surgeons, medical oncologists, nurses, pathologists and radio diagnosis is provided. This should ideally be achieved in 300-odd medical colleges and the 30-odd regional cancer centers. The problem with us is that we try to create standalone islands of excellence.
What we need to do is to replicate that model in medical college after medical college. And if that can be done, then, you know, the outcome of our patients will dramatically improve.

Dr. Saikia: There is recognition of the importance of cancer and one has to understand this is here to stay and we should understand how to deal with it. Because this is only going to exponentially increase, as we go down the line. And we are going to have more and more patients coming in. If you look at the last two decades, the number of patients coming forward to seek treatment for cancer has increased. The awareness about cancer has also increased. So we are going to get more patients with early cancers, which can be potentially treated. So we need to gear up our infrastructure to deal with this.

Dr. Gupta: Goa, for a long time, used to support its patients with about Rs 1.5 lakhs for treatment of each cancer patient. Now there are social insurance schemes for treatment of severe diseases like cancer that exist in Maharashtra, like Rajiv Gandhi Jeevandayee Yojana. In Tamil Nadu, Andhra Pradesh, now Telangana and Seemandhra, Karnataka, state governments have instituted a social health insurance scheme whereby every cancer patient will at least have a minimum optimal treatment that will be delivered to them.

The rates for those treatments are negotiated with the hospitals endowment panel. And sometimes we are very impatient, but I believe that we have made progress. This model needs to be replicated throughout India. All 30 states of India actually need to implement this – what Goa has had in place for a long, long time.

The largest share of population, poverty and disease actually exists in the four states in North India. But if you exclude that and if you look at many other states in South India and West India, they have done remarkably well.

That needs to be strengthened and replicated in other parts. In TMH, if you come, there are a whole lot of patients below the poverty line from Maharashtra, who would never have received their treatment and they receive the complete treatment free of charge.

Dr. Das: I, being from a government institution, say that if we can fully support treatment of our cancer patients it should include firstly and most importantly a thing that we call palliative care for good quality of life.
I agree that progress is there, but maybe a bit slower than what we expect. However, if more and more cancer patients survive, that will probably send out a message to the society as well as the government, that “yes, cancer is treatable”.