Cancer treatment in India

Healthcare services are in terrible condition in India and especially at government hospitals. I know that the situation is not same everywhere but its same more or less everywhere in this country. Government hospitals have either no facilities or they are super corrupt and private hospitals are so expensive that a regular person can not afford them. I know several people who have paid for vaccines or medicines at government hospitals which is supposed to be free. If I just have to talk about hospitals in Varanasi, which is the biggest center for health care services in entire Purvanchal (Eastern Uttar Pradesh which includes 17 districts), very big portion of Bihar state and Madhya Pradesh is full of patients all the time.

There are several government and private hospitals in Varanasi with Sir Sundar Lal Hospital at Banaras Hindu University or BHU being the biggest one. And even at this hospital seeing serious patients sleeping on the floor under open sky, doctors being not available or treatment being evil is never ever a big deal. I have heard of so many complaints where people say their patients just died because of bad services at BHU. In fact I have also personally experienced similar kind of behavior when I was there with a patient of four years whose head was broken, he was bleeding so hard and there was no doctor in the emergency ward. And when treatment started they did not have stitches. Anyways, it is still the biggest hospital of eastern UP and very big hope for a lot of people.

My most recent encounter with this hospital was when my mother noticed a small lump in her breast. We contacted a few doctors at some private hospitals or at doctor’s personal clinic and different ones had different opinion. But most of them said that it might be beginning stage of breast cancer and they will have to remove the whole breast which will be followed by radiation therapy and chemo might also be needed. It was a huge shock for me to hear that someone might be suffering with cancer in my family. Although my mother was absolutely fine with no pain in body or she just did not have any problem at all. I contacted many people and every one suggested me to at least see some doctors at BHU. We contacted oncology department at BHU and they advised FNAC test with mammography x-ray.

The results showed that my mother was suffering from first or second stage of cancer. I had no idea what to do. I was talking with many people, different ones had different opinions but most of them said that I should follow what doctors say at BHU. There is another cancer research hospital run by Indian Railways which is also kind of very famous in the area. A lot of people advised me to see the doctors there but I always had one thing in my mind I won’t start any treatment before getting advise of doctors at Tata Memorial Hospital in Mumbai. Tata Memorial Hospital is most probably the most famous cancer hospital in India. My mind had almost stopped working, I did not know what to do and there was a time when I thought that lets see what the doctors say at Railway hospital and I was preparing to go there.

At the same moment a friend of mine came at home and I told him that I was thinking to see the doctors at Railway Hospital today and then go to Mumbai tomorrow to see the doctors at Tata Memorial. But then he told me that if I am already planning to see the doctors at Tata Memorial why to even waste a day. Why not go there today. I also thought that I should not waste a day and I immediately arranged to travel to Mumbai. I have a few friends (I was expecting help especially from Alok and Yogesh) living in Mumbai and I informed them my mother’s situation and in fact one of them happened to know a doctor personally at TMC. Somehow Mr. Arun Pathak, who is like my elder brother and he is a social worker and a politician in Varanasi, also heard about my situation and immediately arranged my stay in Mumbai at an apartment which he had rented for himself.

When I arrived in Mumbai Yogesh came to pick me up from the airport and dropped me at his place. At the same time Mr. Pathak wanted me to stay at his place which was the biggest luxury possible in a city like Mumbai where hundreds of thousands of people have to sleep on the street but I had two apartments to live there. I spent a few nights at Mr. Pathak’s place. I arrived in Mumbai without my mother and went to TMC but unfortunately the doctor my friend knew was basically dealing with mouth cancer. So we could not see him. Anyways, everything seemed super organized at TMC. I was really amazed by hospital management: everything seemed to be working in order, staffs were very helpful, all the services were computerized, things working very smoothly, it seemed like a hospital which had some sense of hospital management and care for patients.

They looked at the FNAC and mammography report and asked me if I would like to get treatment started at TMC or if I just needed advise. I don’t know why but I said that I need the treatment. There were two categories of registration – general patients and private patients. If I get registered under general patients category then the cost of the treatment was going to be ten times cheaper than if I get registered under private patient category. They mentioned it clearly at that same moment that there won’t be any discrimination or different in treatment whether I get treatment under general patient category or private patient category. The only different would be of the rooms. The rooms of patients under general category are basically shared basis whereas rooms for patients under private category are private. Doctors are same, treatment is same…everything same but some luxury.

They provide bed only when the treatment is happening like during surgery or when chemo is being given for two three hours. Rest of the time the patients have to take care of themselves and I literally saw hundreds of people sleeping on the street outside the hotel who were there go get treatment. Those people would go to the hospital whenever it was needed otherwise street was their home for rest of the times. Sometimes they just live on the street for the entire duration of the treatment which might be even six-seven months or even more. The hospital also gave me an idea about the cost of the treatment immediately which was around 30,000 if I get treatment under general category or around 2,50,000 if I get treatment under private patient. I thought for a while and chose the private category.

My mother had always lived a very relaxed life and I did not want her to be in any kind of stress. Although the cost of the treatment was out of my budget because it was not only about paying for the treatment but I knew that traveling between Mumbai and Varanasi and other expenses were also going to be there. But I still made the decision of getting the treatment under private category. They registered me and sent me to the breast cancer department. There was a very big line but again everything was very well organized so it was not a big deal because at least I knew what was happening. Finally my number came, I was really scared because I did not know what the doctor was going to tell me, and finally entered in a room where I saw a lady doctor waiting for me.

There was something really good that they see only one patient at a time and give proper time otherwise at BHU there is one doctor surrounded by hundreds of patients and you just don’t know whats happening. The doctors saw all the reports and stared asking some questions related with my mother which I did not know. I asked her if she would like to talk with her on phone but she denied. Anyways, I called my mother on phone and tried to answer her questions. The doctor said that she would like to see the patient and without meeting the patient it won’t be possible for her to say anything. She said that in some case doctors might advise or give some suggestions but in case of breast cancer it is necessary to see the patient personally because it is necessary to feel the lump and size of breasts also matter which they need to see. Finally I arranged my mother to come to Mumbai and brought her to the hospital after a couple of days.

The doctors looked at all the reports, examined my mother personally and advised a few blood tests with biopsy. They said that FNAC was not enough and biopsy test was also needed. And in any case they were not going to rely on BHU test reports if we wanted the treatment there. So actually they advised so many different blood tests and during the same time they also advised us to meet with the radiation therapy doctor. We saw the radiation therapy doctor also, she also looked at the lump and said we had two options- either have the full breast removal followed by chemo and radiation therapy or just get the lump removed followed by the chemo radiation. I did not know what to do and I asked her for some time. We contacted some other doctors and all of them suggested us that let the doctor make the decision. During this time we got biopsy and other tests done.

And when we went to see the doctor again they said that a surgery will be performed and since the lump was not so big it is also possible to just remove the lump and not the entire breast. They again gave us an opportunity to get the surgery done at TMC, have medical protocol prepared by the doctors at TMC but have rest of the treatment like chemo followed by other doctors at BHU because it could have been easier for us. When doctor gave us this option my mother was also present there who immediately refused it because she had also seen the condition at BHU. She wanted to get the treatment at TMC only. By this time everything was almost clear but there was only suspicion regarding chemo cycles. The doctors said that final decision will be made after the surgery is done because the number of chemo cycles are decided based on the reports of lymph nodes checkup which are done during and post surgery.

They gave us two options- either we get surgery done at TMC after three months because there were already so many patients in line or we get the surgery done within a week at their another research center located in Kharghar, Navi Mumbai. This other center is also run by the same team but only the location was different. It was around 40 KMs from the old hospital. This new center of TMC was opened in Kharghar in the year 2002 and it was called Advanced Center for Treatment, Research & Education in Cancer. I was still a bit confused and did not want to miss any opportunity of taking advice of as many people as people. One of my friends relatives in Mumbai suggested me to see the doctors at a charitable hospital located in Mumbai called Millat Hospital.

I decided to at least see the doctors at Millat and see what they say. When I met with the doctor there, he also said that surgery will  be done, chemo will  be needed with radiation therapy. But they did not have radiation therapy available at Millat. Finally we made a decision that we will get all the treatments done at TMC only. We contacted the doctors at TMC and agreed on getting the surgery done at Kharghar center. They prepared all the papers and transferred the case at Kharghar center. At first I went to Kharghar with a friend of Yogesh named Ashish who always a very big help. The biggest benefit of having Ashish was that he used to have his own pathology which meant he had some knowledge of medical field and other than that he was also a Marathi which means he could speak local language which is always a very big help.

And in any case it is very hard to find people like Ashish who are always willing to help others. He was not only helping to me but whoever wanted. I noticed him several times just going to unknown people at the hospital and asking them if they needed some help. Anyways, the doctors at Kharghar center said that they could perform the surgery in next four days. They gave me a date and asked me to bring the patient the evening before of surgery and get her admitted at the hospital. Finally I arrived at the hospital the evening before, doctors checked my mother and then the biggest blunder happened. They did not have any private room available, which the patients registered under private category are supposed to get. It was not possible for me to travel back home then return back at the hospital the next day at 7 AM because the traffic in Mumbai was crazy.

They asked me to sleep at the hospital guesthouse which is basically lodging facility patients getting treatment under general category which did not seem to be a big issue and we thought that we will sleep overnight there. After all it was only about a night but once we arrived at the guesthouse room I said to myself that it was not the place where my mother could sleep. The biggest problem was that there were eight beds at a distance of hardly two feet from each other in one room and all of them had patients whose surgery was already performed. Most of them had either mouth or throat cancer and would was visible. I had full sympathy for the patients but I did not want my mother to be scared of surgery or be stressful the night before her surgery.

I think they should keep the pre-surgery patients separated from post surgery patients because the cancer wounds are very scary and it might scare the patients going to get surgery. The other problem, which was the biggest, was that the windows of the room were kept closed intentionally so that already sick patients do not feel cold. There was terrible smell of medicine without any ventilation in the room. I saw at my mother’s face, she did not say even a single word but I knew that she was not comfortable at all. I immediately decided that I was not going to stay there over night. Fortunately I had another friend from Varanasi who was in Mumbai those days and he had a relative living somewhere in Kharghar. I called him and explained the situation at the hospital and finally he arranged for us to sleep overnight at his relative’s place which was happened to be hardly 10 minutes drive from the hospital. It was such a big help.

Anyways, I could not sleep the whole night because I was tense about the surgery the next day. I was just laying down and thinking about the next day and suddenly I noticed the sunlight. I prepared myself and we headed for the hospital. The doctors did some basic tests and asked us to wait outside the surgery room. During this time different doctors and nurses were coming, asking us different questions and one of them asked us what patient has eaten or drank since morning. My mother had nothing other than a tea but when I informed her about it, she asked milk tea? I said and then they said that we have to wait for another four hours minimum because the tea my mother had contained milk which is a solid food product as per their science. And if there is any food in the stomach then it can cause serious respiratory problems during the surgery.

Actually the doctors had advised my mother the evening before to not eat anything after walking up on the day of surgery but we did not think that milk could also be a problem. The doctors sent me to deposit the surgery fee which was kind of unexpected. They asked me to deposit 50,000 immediately. I had around 20,000 in cash with me and hardly 40,000 in the bank account. The worse thing was that sometimes ATMs do not allow to withdraw more than 25,000 a day. Anyways, somehow it worked, I had money and I deposited it. By the time I returned back at the surgery room, my mother was already inside the operation theater. The doctors had told me that there are two kinds of radiation therapy- internal and external. Internal radiation therapy can be given in case if the lymph nodes are not infected with cancer cells and they might at least put a tube inside the breast during surgery for internal radiation if the case was in favor.

In case if the lymph nodes are also infected then only external radiation was the possibility. The doctors told me that they take a tiny peace of flesh from the lymph node and send it for testing while the surgery is going on, which is basically just a quick checkup, which only gives a quick sense whether lymph nodes are infected or not. The final treatment is planned only after the detailed report which might take up to a week.  The doctors had also said that the final decision about whether to remove the whole breast or just the lump will also be made during the surgery after seeing the level of infection. I think it was the most tense moment of my life when I was sitting outside the operation theater waiting to hear anything regarding what was going on inside. Suddenly a doctor came and said that they have sent the lymph node samples to the lab and the result will come soon and they will inform us.

And then another doctor came and he said that there was no need to remove the whole breast because lump was not so big and the infection was also not serious but the internal radiation was not possible because there was some infection in the lymph nodes. They also said that in such case chemo might be needed, 90%, the final decision will be made once the detailed report has come. By this time my elder brother, Chandan, also arrived from Delhi which was actually a very big psychological support for me otherwise I was going crazy. Chandan is a very matured man and deal such situations better than me. Finally the surgery was finished and I they brought my mother outside the operation theater but she was still kept on the other side of a glass door. I saw her sleeping, actually she was fainted due to anesthesia. Now they asked us to bring some medicine from the dispensary.

Something that I liked about this hospital a lot is that there was no cheating. They make a smart card for all of the patients, when doctors prescribe any medicine then the data is  automatically entered into the smart card. Money is also deposited in advance in the smart card. You just go to the dispensary, put the smart card on a card reader, the people at the counter know what medicine to give, money is also automatically deducted from the smart card, very nice system. Otherwise at BHU it is a very famous scam, and everyone is aware of it, that the doctors give you a list of medicine the evening before of surgery but the real drama starts while the surgery is going on. Different nurses and staffs come, give you a peace of paper and ask you to bring more medicines. They pretend to be in hurry and very serious which is nothing other than an emotional blackmailing.

People have no idea what these medicines are for and its a very human thing that nobody would question those nurses. Families want to do their best by having faith on the doctors and other staffs but in fact they are cheated and looted. Later all those medicines are sold. And its not only the case at BHU but at all the other government and private hospitals in Varanasi and in other cities. Two years ago one of my friends father needed a heart surgery and the nurses at BHU told us that they had all the medicines available with them at the hospital which they were willing to sale for half the printed rate. This is how they use those extra medicines that they get from the patients family while the surgery was going on. Luckily there was no such system at TMC.

Finally we brought all the medicines for my mother and by this time she was already shifted to ICU. The doctors kept my mother under observation for 24 hours and then discharged her from the hospital and advised to see the doctors at the old center of TMC in Mumbai after a week. They had also implanted a surgical drain to drain out the fluid of the wound and we were supposed to have a written record of how much fluid was drained everyday. She was taking medicines, getting better everyday and finally the surgical drain was also taken out after fifteen days or so.

My mother was called at the hospital the very next day of the surgery for a physical exercise training session. In my opinion it was not only for physical exercise but it was also to boost up the moral of the patients through psychological training. They taught some physical exercises to my mother and other than that there were a few volunteers who shared their stories and I think that was very important. They were basically telling all the positiveness about their treatment which helps a lot to prepare the patients for the treatment. By this time the detailed report of lymph node test was also available and doctors had an idea about the treatment. They advised us several other tests which also included whole body bone scan and CT scan.

There is always a very big line for any service at TMC because they have patients have from over India, in fact from out of India as well. Hence the line for bone scan and CT scan was also very big. We got the date for bone scan after five days but nearest date available for CT scan was after 18 days. There was a possibility of getting these tests done at some other hospital but we did not want any excuse so decided to get the test done only at TMC. And in any case my mother was on other medicines and it was not urgent to get those tests done. Finally both of the tests were done, we contacted the doctors again, they looked at the reports and prepared the final medical protocol.

They advised eight cycles of chemo therapy (with two different medicines, four each) at an interval of every twenty days and twenty cycles of radiation therapy with Linear accelerator technology. They have advised five sittings of radiation therapy each week which means it will take around one month. After planning the medical protocol they again asked us if we would like to continue the treatment at BHU but again my mother refused it. By this time she was scared of BHU because during these days she met so many other patients who came from either Bihar or eastern UP (where we come from) and most of them had similar stories that they got their first treatment in their own cities of Bihar or other cities of eastern UP, the doctors immediately removed both breasts, gave several chemos and finally said that the situation was not under their control and they should see the doctors at BHU. And when these patients went to BHU then their case was refereed to TMC.

The other option for us to get treatment away from Mumbai was Delhi because my elder brother lives there. Mumabi was not a big problem for us but it is always the best to live with the family. So we were looking for options where my mother could stay with the family while getting treatment. My elder brother, Chandan, contacted AIIMS in New Delhi but there was a very big problem that the line to get treatment was very big, our number would have come after six months or so. Another thing was that the doctors and other staffs at AIIMS, whom my brother knew personally, said that they did not understand the reason behind bring the patient from TMC to AIIMS when it was possible to get treatment there. They said that TMC is so better than AIIMS that when any case is out of their control then they send their own patients at TMC.

They said that the best thing with TMC is their huge research data which in fact no other hospital in this country has. The other option of getting treatment in Delhi was at some private hospital. Chandan contacted a very big private hospital near to his home called Dharamshila Hospital in Noida. We were shocked to hear that the treatment there was around ten times more expensive than at TMC. The cost of chemo medicines at TMC was around 8,000 each but the cost of the same medicine at Dharamshila was around 60,000 each + other expenses like room charges, doctors fee etc. The cost of radiation therapy at TMC was around 25000 but the cost of the same radiation therapy at Dharamshila was around 2,00,000. Many people told us that these private hospitals always tell you less amount, if they are asking for 7,00,000 then their total final bill would never ever be less than one million.

It was insane, how come someone could be this selfish. Anyways, after reviewing everything we realized that TMC was the best option possible for us and we decided to get proceed with the treatment there only. Anyways, we contacted the doctors again at TMC and informed them about our decision but I still had suspicion in my mind about how chemo would react on my mother’s body who was 67 years old. I asked the doctors about it and just like any other time they gave me proper time and explained everything. They said that age does not matter in getting chemo. The thing which matters the most is the general health of the patient and my mother was perfectly fit. She did not even have diabetes or high / low blood pressure. The doctor said that sometimes they give chemo to even 80 years old person if he is fit and sometimes they can not give chemo to even a twenty years old one if he has health issues.

It was very relaxed feeling to hear getting chemo was not a complicated issue in my mother’s case. Finally they gave all of the dates for chemo and radiation. The date of first chemo came, we arrived at the hospital, deposited the money and proceeded with the medical procedure. The first thing that happens on the day of chemo is a blood test which is called CBC (complete blood count) which is basically a general test that gives information about the cells in the blood. Just like any other service at TMC, the result of this test also takes around 4 hours and we have to meet with the doctors who examine the blood test and then approve getting chemo. After getting approval of the doctors we had to go to the ward where they give chemo. Here the process was not so long, it took around an hour of waiting so that they could prepare the medicine.

In most of the cases chemo is given as an infusion into a vein and my mother’s chemo was also given by inserting a tube with a needle into a vein in her arms. The first chemo was kind of fast, it took hardly 30 minutes and now the doctors asked us to take patients back home. They advised us to see them back after a week. They said that the most common side affects of the medicine given to my mother were upset stomach, vomiting, nausea, constipation, diarrhea, headache and hair loos. They also gave her medicines for upset stomach but advised to not start it if it was needed. Since it was the first chemo they wanted to see how her body was reacting. The first twenty hours were absolutely fine, she was just like any other day but then she felt some problems which were not so big. A little bit of stomach ache sometimes and cramps.

When we saw the doctors after a week they said that was a very normal side affect and there was nothing to worry about. She also started to feel better everyday and finally we brought her back to Varanasi after a week. We did it only because we wanted to her to live close to her friends and family rather than getting bored with my friends in Mumbai. Other side affects were gone but one thing was constant- loosing the hair and the speed was really rapid. We also had to change her diet completely. The doctors advised us to give food full of fiber mostly. We sent her back to Mumabi again a day before the next chemo. The next chemo was also done last the first one. CBD first, then doctors approval and then chemo. But this time my mother made a mistake because of some confusion. She did not take the medicine which was given to her for upset stomach. She was taking some other medicine and the result was serious upset stomach with ache and nausea. 

She was living with my friends and I was in Varanasi because my friends had told me that they would take care of her and I did not need to be present in Mumbai. Actually I make most of my by working in tourism which is a seasonal business in Varanasi and my friends advised me to at least work so there is no problem in finance hence I had sent my mother alone to Mumbai and was hoping my friends to take care of her. Our plan was that she would go to Mumbai, get chemo with help of my friends and then return back to Varanasi after three-four days. Suddenly she called on the third day after getting chemo that she was not feeling good at all. She had serious cramps in her stomach all the time. I went to Mumbai the very next day, spoke someone at the call center of TMC and they asked me if she was taking both of the medicines. I asked my mother the same and she said that she took only one of them.

She had left the one which was good in case of upset stomach. Those people at TMC advised me to give her that medicine. She took the medicine that night and she was absolutely fine the next day. So the whole mistake was that she did not take the proper medicine. After getting second chemo we could easily see how she was loosing her hair very fast. Finally four cycles of first medicine were completed in total of twelve weeks (each chemo is given at an interval of three weeks) and we realized that she does not feel anything abnormal for first twenty four hours, everything stays normal but the she starts getting side affects which could be avoided if post chemo medicines are taken properly. She was a bit sick for a few days and then she was fine, she traveled between Mumbai and Varanasi during the gap between two chemos. In fact she also went to Delhi and Pune once so traveling and staying away from Mumabi was a good decision.

And finally the fifth chemo came when the medicine was going to be changed. I was again worried this time as I did not know how her body would react to this different medicine. Rest of the procedure was same but since the medicine was different, it also took longer than the first four ones. The first four ones hardly took 30 minutes each but the fifth one took almost two hours. They said that the quantity of medicine is same but this one is given slowly. The side affect of this medicine was also different and since it was a different medicine the doctors asked bring the patient back at hospital after a week for followup which means we could not bring her to Varanasi this time.

The doctor said that the side affect of this medicine would be mostly pain in the muscles and it was exactly the same. My mother did not feel any problems with her stomach but felt serious pain in her body, mostly in the legs, around 24 hours after the medicine was given. Since they wanted to see the side affects they did not gave any medicine. They said if there is any problem bring the patient immediately to the hospital. And this pain was so strong that my friends had to bring my mother at the hospital only on the third day after chemo. They again gave two different pills and it was all right. She is getting her sixth chemo today in Mumbai and I hope that it will be all right. Now there are two more chemos left and then radiation therapy will start from 29th of February.

My mother first noticed the lump in her breast sometime in the last week of July and I went to Mumbai on the 12th of August. Its already 11th of January today and my whole experience dealing with this situation was sometimes full of anger, sadness, hopelessness, confusion, weakness, stress and sometimes it was full of hope, satisfaction and strength. I was hopeless, angry, sad and confused until I was in Varanasi consulting BHU or other doctors in my city but I was full of hope and satisfied as soon as I arrived at TMC. The only time I was not comfortable at TMC was when they asked me to sleep at their guesthouse in Kharghar the evening before surgery. The helping behavior of my friends, especially Yogesh, Ashish, Alok and Babu,  gave me so much strength that really helped me and my family to deal with this hard time. Mr. Arun Pathk’s generosity of providing his apartment in Mumbai and his cousin (Sandeep) welcoming and helping nature was also huge help for me.

I will never ever forget all the help of my friends. In Hindu philosophy we have a belief that owe something to someone but can not repay in this life then you do it in your next life and I am sure that I can not repay my friends in this life for sure, especially to Yogesh. Maybe I will have to be reborn, maybe more than once, to repay only my friends. Since the treatment is still going on, the article does not finish here. I will be keep writing experience of dealing with this situation and my only intention behind writing this post is that others might also get benefited otherwise I usually never write about my personal stories. But I have advise for anyone seeking cancer treatment that if you do not have money to go to really big private hospitals then don’t waste your time, just go to TMC and they will take care you. There is no one better than them.

 

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