Battling Pancreatic Cancer in India
Managing Cancer for a family member is a journey that one should not experience, there are lots of things that one should and should not do to get through this journey in one piece, I learned these the hard way and would like to put these out for the anyone to learn from.
Every once in a while, we hear of someone who has been diagnosed with cancer or passed away because of it. Feels like one of those scary stories that you hear hoping you don’d find yourself in the middle of one.
Such was Cancer for me until my dad (71 years) was diagnosed with Pancreatic cancer. After recovering from the initial shock, it was time to meet the problem head-on and deal with it.
Pancreatic cancer is only detected at a late stage due to its nature, steady weight loss, sudden onset of diabetes, loss of appetite and severe pain in the stomach/abdominal region were the primary symptoms. We detected it after doing a CT scan and a blood test of CA 19.9 marker. Most cancer types have their typical symptoms and each of them have marker tests that help detect their presence.
We consulted a very senior surgeon who gave my dad 3 months to get his life in order and many doctors concurred with the diagnosis. One of my good friend, a senior doctor and surgeon told me that we should not give up hope and should go for a treatment regimen and hope for the best. We decided not to give up and chose to give it a fitting fight.
One of the important things that one has to keep in mind is, “Quality of life (QOL)” of a patient. This means the patient must live comfortably as long as they live and all treatments must be oriented towards this as opposed to keeping the patient alive but in a painful state. We were keen to do what it takes to keep my dad’s QOL best and nothing more.
Confirming that you actually have cancer
The trickiest part is to actually confirm that you have cancer. It is hard to accept and the family is in constant doubt if the disease is cancer at all. Many a times, the tumor could be benign yet causing pain because it is pressing some organ/nerve. The only way to tell that you have cancer 100% is to do a biopsy (cutting a piece of the tumor and testing it). However in pancreatic cancer it was not straight forward due to it’s intricate location. Therefore we did a FNAC (Fine needle aspiration cytology) where they insert a needle and take some tissues from the tumor and test it. The results came out saying “High possibility of cancer” … which we interpreted as a confirmation.
Types of Cancer
There are several types of cancers, some more aggressive than the others. In case of my dad we were blessed with a pretty aggressive one called Adenocarcinoma.
Treatment Options
When you tell your near and dear ones about the discovery, you will get a lot of free advise, some will say take Ayurvedha, some will say do Immunotherapy, some will tell you to do Siddha or Homeopathic remedies. Whatever you choose make sure you choose “one” and stick to it. DO NOT do multiple treatments because you will not know what is working or what is not and life would become a constant guessing game.
There are several treatment options for Pancreatic cancer, the treatment is often decided by a Medical Oncologist. Medical oncologists treat cancer using medication. They typically work in partnership with a surgeon and a radio therapist to decide what the best course would be based on age, type of cancer, location, physical/mental condition of the patient, support system, financial resources and many other parameters. Some of the options we weighed were
Traditional Surgery — typically done only if the patient is young and fit, also followed by chemo/radio therapy. Cost is significantly high depending on where you do it.
Chemotherapy — Most common treatment, basically a medicine injected into your blood periodically to fight the cancer cells. Each cancer type has proven drug mostly published by western studies and we consume it hoping that it works for people of Asian descent and most of the times it does work. Issue is the chemo medication can make the patients veins hard and have their own set of issues and the toxicity of these medicines mean that they cannot be given forever.
Radio Therapy — Probably 2nd most common, is more painful and harsher and expensive. They make the patient very tired and can be given based on fitness levels.
Combination Therapies — Combination of Chemo and Radio therapy are found to be very effective for Pancreatic cancer and many other forms of cancer. More commonly used in the west and is relatively less used in India.
Immunotherapy — Extremely expensive at the moment, not easily accessible, you could potentially find trials and be a part of it but not very commonly used yet in India.
Ayurveda — Heard that Shimoga has good offerings. Never tried.
Ayurvedha with Nano Technology Treatment — Was the closest alternate treatment we considered. We had some great conversations with www.dnaayurveda.com/ but never got around to trying it.
Cyber Knife — Very new and available in advanced hospitals. But never got around to trying it.
Studies that can help in the near future
Organization De Scalene | MS Drug (Currently under research) |
Food and Support System
The family of the patient has a significant responsibility and work when someone ends up with Pancreatic cancer. In most cases the patients are advised to eat small quantities of nutritional food in frequent intervals. In my dad’s case around 6 times a day. The appetite of the patient vacillates during this time due to heavy medication as well.
People advise all kinds of things to eat and don’t. But the right thing is simple, let the patient eat whatever they feel like. Because any nutrition is good nutrition at this stage and avoid putting any restrictions without a doctor’s recommendation as you may be causing more harm than help.
Treatment Cost and Insurance
This is the most aspect of treating cancer in India. In India, we can treat pancreatic cancer for as less as a few thousand rupees as well as crores. To give you a perspective, when I consulted a doctor in Adyar Cancer Research Institute where some fantastic work is done giving free/subsidized cancer treatment to poor, I paid a few 100 rupees. However when I attempted consulting a doctor in Apollo Proton for a modern treatment from US, a 15 minute consultation costed Rs 15,000!
If you are not careful, you can blow all your savings and insurance in no time. One must be very careful in choosing the right treatment regimen.
Here are the steps to getting the best treatment at the most reasonable price,
- Find your Pillars : By this I mean, find a solid oncologist/surgeon whom you can trust and keep going back to for choosing your treatment. These must be people whom you can trust and can go back to even if you take treatment from a different institution and not necessarily in the hospital/institution that they work in. There are some wonderful doctors who agree to help you if you explain your situation.
- Find your Hospital : Find a good hospital and doctor that allows you to bring your own chemo medication: most often, hospitals do not allow you to buy your own chemo medication, Chemo medication can be purchased from medicine distributors by patients directly for 1/4th of the cost. However corporate hospitals sell it with exorbitant markups. For example, one medication that we got outside for Rs 5,000/dose had costed Rs 25,000 in a hospital for the same brand and same dosage (True fact). If you take your own medication for treatment, the charges you incur per chemo are significantly lesser and your insurance can last much longer.
- Build Relationships : Establish a good relationship with the medicine distributor because you are going to need a lot of medication on an ongoing basis and every penny counts. Establish a good rapport with the nursing staff and doctors because they are there to help you and take care of you.
At the end of the day, the clock is always ticking. Just ensure you have great memories with your loved one and take it one day at a time making every memory count. Most important thing is to maintain a high quality of life.
My dad lived for over 2 years with pancreatic cancer and during the all of these two years he was able to take care of his daily chores. Much more than the 3 months that he was given at the start. So never let anyone dictate how long one can live. Go with your gut feel.
Should you have any questions please post it in the comments and am happy to answer.