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PATIENT/CAREGIVER CORNER
Year : 2020  |  Volume : 3  |  Issue : 3  |  Page : 498-500

Cancer – My experience


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Date of Submission24-Jan-2020
Date of Acceptance26-Jan-2020
Date of Web Publication19-Sep-2020

Correspondence Address:
Jitendranath Nayer


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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/CRST.CRST_40_20

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How to cite this article:
Nayer J. Cancer – My experience. Cancer Res Stat Treat 2020;3:498-500

How to cite this URL:
Nayer J. Cancer – My experience. Cancer Res Stat Treat [serial online] 2020 [cited 2020 Oct 22];3:498-500. Available from: https://www.crstonline.com/text.asp?2020/3/3/498/295521



I had always assumed that cancer is a disease that remains undetected till it is too late because the symptoms often do not point to its presence. I had heard of friends and relatives who complained of niggling problems which were finally diagnosed as cancer. I also almost always heard that the disease was detected late. In my case, the problem manifested itself in such a manner that it required the immediate medical attention of a specialist. It all started with me passing copious amounts of blood in my urine. I first went to my general practitioner (GP), who advised me to wait and watch for a few days. Since it persisted, I was advised to consult a urologist.

The next step was to consult friends and relatives to recommend a “good urologist.” A family friend in the medical profession recommended his colleague working in the same hospital. The urologist advised me to get a computed tomography (CT) scan done which revealed a tumor in the urinary bladder. I underwent surgery to remove the tumor. The biopsy revealed that the tumor was cancerous.

The C word sent the family into a state of shock. Cancer is assumed to be a killer disease which simultaneously destroys the patient's quality of life. I was advised to consult a uro-oncologist (surgical oncology). I was advised that the disease was detected at a very early stage and that Stage 1 urinary bladder cancer is curable. There was no guarantee, however, that the disease would not resurface. I was assured the disease follows a structured pattern in that it progresses from Stage 1 to Stage 2, and then Stage 3. The recurrence would be in the same organ, that is, the urinary bladder. I was informed of what the treatment would be if it occurred at each of the stages. I was assured that even if it recurred at Stage 3, my urinary bladder would be reconstructed using my muscles and tissues and that I would not have to dread spending the rest of my life with a urine bag dangling on my side. Most importantly, it was very probable that the disease would not progress beyond Stage 1. I was informed that I would have to undergo treatment for cancer which would then be followed up by regular quarterly health checkups. We all relaxed and were grateful that the disease was probably curable and not as terrible as what one normally assumes it to be. The C word was after all not so deadly!

The treatment of the disease was also very different from what I had associated with cancer. I had seen many friends and relatives suffer while going through chemotherapy and radiation. My treatment entailed getting admitted for a daycare procedure. Bacillus Calmette–Guerin bacilli were injected into my urinary bladder. This was done under general anesthesia. After coming out of the operation theater and back into the ward, I had to keep changing my position to ensure that the injected medicine reached all parts of the bladder. There was no discomfort or side effects. It was at best a minor physical inconvenience. I had six such admissions.

Post the treatment, I went through regular quarterly checkups. This was called cystoscopy. This was a daycare procedure under general anesthesia. I would be prepped for the procedure in the ward, wheeled into the operation theater, knocked out by the anesthesia, woken up in the recovery area outside the operation theaters and finally wheeled back into the ward and get discharged after a few hours.

I underwent the surgery for removal of the tumor in October 2017, followed by the treatment of the disease and periodical quarterly checkups. The last quarterly checkup was on May 31, 2019. What struck me during the entire treatment and follow-up was that the whole process was cold and impersonal. In India, we search for advice on the “best” doctor and try to get treatment from the “best;” so did I. During the entire period, I met my treating doctor at most twice in the Outpatient Department (OPD). After that, I met a series of different doctors in the ward prior to being wheeled into the operation theater, just faces not even names. The only doctor who spent some time with me was the anesthetist who had to go through a protocol of asking a series of questions. Each time the anesthetist was different. The nurses were the ones who were the actual caregivers. They made it a point to recognize me every time I got hospitalized. There was a personal touch in their entire conduct.

Since everything seemed to be going on well, my wife and I used to joke about the impersonal process and about getting treatment from the “best” doctor we never seemed to meet. The last cystoscopy was on May 31, 2019. I was told that it was all clear. The disease was kept at bay. On June 4, 2019, I went to my GP because I had an upset stomach. She checked my blood pressure (BP), and it was high. I was surprised because I never had high BP, and it was normal even on May 31 when I had undergone the cystoscopy.

I decided to meet a specialist since I also had a swelling on my left leg for over three months. I had assumed that the swelling was on account of a cycling injury. I had mentioned this fact to the doctors I met when I was admitted for the last cystoscopy. I was advised it had nothing to do with my cancer. The specialist put me through a test for deep venous thrombosis, which turned out to be negative.

My doctor asked me to get a CT scan done of my chest since I had complained to him that I was getting breathless while cycling. I used to follow a routine of 30 km every alternate day on weekdays and 80–100 km on Sundays. Since February of 2019, I noticed that my speed dropped from an average of 23–24 km/h to <21 km/h. I also noticed that I required more effort cycling, and I had started getting breathless, which was something that had never happened to me unless it was a burst of high speed.

As advised, I went to get the CT scan of my chest done. After the scan was done, I was told that I had to wait so that they could confirm that it was done properly. While waiting for the confirmation, I was told that the radiologist wanted to see me. She informed me that she needed to get the scan of my abdomen as well since she felt she detected a problem when the scan went over the abdomen. I gave my consent. She also talked to my doctor for his consent. The scan revealed a growth in the ilium as well as the clavicle.

I was advised that I needed to now consult a medical oncologist. So once again, the search started for the “best” doctor. My wife and I decided that it would be best if I could take treatment in a hospital close to our house to cut down on the travel time. We were advised to consult a very eminent oncologist attached to the hospital we zeroed in on. To get an appointment, we had to ask my son's classmate who is a cardiologist in the hospital for an appointment.

The oncologist advised us to get a biopsy done. The biopsy report revealed it was Stage 4 cancer. The C word had come back with a vengeance.

In the meanwhile, we were advised by a dear friend of ours, who is also a pediatrician, that Tata Memorial Hospital has a system for a second opinion. Her classmate in MBBS, an oncologist at Tata Memorial, helped us with the procedure for a second opinion. What struck us was the crowd of patients, the scale of human misery because of cancer and the sheer pressure on the doctors to manage this sea of humanity in distress. When we met the doctor, we were candidly told that the disease was in an advanced stage and that I would have to go through chemotherapy followed by immunotherapy, and then I would be treated with a new molecule that was approved and finally another molecule that was expected to get regulatory approval. The prognosis was grim-I could expect to live for another 2–3 years after going through all this treatment and if I was lucky, one of the procedures may just work in staving off the disease.

We were very dispassionately and clinically informed of what to expect. This candid feedback evoked very different reactions. As a patient, I appreciated the fact that there were no false hopes given. My wife was shattered by the information.

We had also sought advice on whether we should take treatment from Tata Memorial. We were told that they would be happy to treat me, but I had to be sure I could handle the crowd and the time that would be required to meet the doctors. We decided to continue treatment in a private hospital.

We informed the doctor in Tata Memorial that we intended to take treatment from the highly recommended oncologist. We were told that he was from Tata Memorial and was indeed a very reputed doctor.

We sought an appointment with the oncologist to share the biopsy report and decide the course of future treatment. We were advised that there was a waiting period of three weeks, but we could meet his junior doctor. After three hours of a futile wait to meet the junior doctor, I decided I could not take it any longer. I concluded that the so-called “best” is an elusive myth. We decided we needed a doctor who is accessible and recognizes that the patient and caregivers also need a personal touch since the disease was in an advanced stage.

My son's cardiologist friend referred us to Dr. Sewanti Limaye. She advised us that I would have to go through chemotherapy. We were taken through the side effects that the treatment may entail. We shared with her the opinion of Tata Memorial and asked her if she would have any objections if we sought their opinion at different stages of my treatment. She welcomed any advice that would be given by Tata Memorial. She informed us that she would be taking a second opinion whenever required from her institute in the USA.

We also told her of our need to be able to communicate with her because of the sheer anxiety of the unknown and the doubts that keep cropping up. We agreed on simple rules of engagement. She made it clear she would not be able to attend to calls on her mobile since she would end up as a telephone operator. The rules of engagement were simple-I would send her a short message service (SMS), and she would respond to the SMS, and if necessary, she would call. This system worked smoothly during the 6-month period I underwent chemotherapy. More importantly, Dr. Limaye met us every time I was admitted for chemotherapy and spent time answering our questions. During OPD consultations, she spent quite some time answering questions which we felt may sound idiotic. She was extremely patient and considerate.

The chemotherapy treatment was very uncomfortable with side effects of nausea, acute acidity, and swelling in the arms. My sleep pattern was severely affected. I escaped the most visible side effect of chemotherapy: loss of hair. The comfort of being able to communicate with my doctor and the care taken by the nurses during the chemotherapy sessions more than made up for the physical discomfort.

Before we went through chemotherapy, I decided that I must meet my treating surgeon to check on why the cancer had directly progressed to Stage 4 when we were told by him that its progression would be linear. We were told that this was a one in a million case which skipped Stages 2 and 3.

The comfort of being treated by a doctor who was not only accessible but extremely patient answering the questions of the caregiver is something which got us through this very trying period. Chemotherapy drugs are administered by the nursing staff. We came to admire them for their efficient yet sensitive handling of patients. We realized that they were always stretched attending to patients, yet they were always caring and responsive. We would have never got through this trying phase without the support of friends and relatives. Their presence took our minds off the problem with easy conversation, laughter and jokes. At no time, did we feel we were alone in this battle against the disease.

My chemotherapy is over. I am in remission. Dr. Limaye informs me that she would like to commence the next level of treatment as a maintenance therapy. I have also obtained a second opinion from Tata Memorial. Clearly, the battle is on, the prognosis remains grim but the determination to battle on has not waned.

About the author:

Jitendranath Nayer, commonly known as Jeetu Nayer by friends and fellow professionals, is a 66-year-old with a passion and zest for life.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.






 

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