New Diagnosis and the choice of Treatment:
“Oh! My arm, it is paining like hell,” I had cried out. Excruciating pain had woken me up. I had pressed the arm, thinking I had slept on that side. I felt that armpit and surrounding area was swollen. I recalled my dog, Ginger, had jumped on me the previous day and hit me hard on chest while coming to meet and greet me at the gate. Taking that to be the reason I took a pain killer. The pain did not subside till evening so went to my gynecologist Dr Kalpana Gupta. On physical examination she suspected some hardness in the breast, sort of a lump. I told her of the injury. She concurred yet to allay all doubts she forced me to go in for the mammography. Next day, at the lab, after the test, I was not asked to come back in the evening to collect the report but was referred to Doctor on duty. She suspected tumour. She wanted to do FNAC (Fine Needle aspiration cytology) a diagnostic procedure used to investigate lumps or masses. Even then I was in a state of disbelief. It was short-lived. The reports were positive. It was malignant.
It could not be. The reports must be wrong. There must have been mix up. But truth was staring hard in my face and on those of my family and Doctor. Once the realization set in after the shock, moaning and complaining to God we were faced with the questions what next? Whom to consult? Which Doctor? Which hospital? Difficult questions with multiple answers. Were alternative medicines any good? There were as many suggestions as people spoken to. The phone was buzzing consistently. Advice poured in from all nooks and corners. The survivors and fighters had their own stories of woes or satisfaction about the hospitals they were getting treatment from. If one was happy with the team of Doctors the other was highly disgruntled with the supporting staff. Third thought that the hospital where she was admitted to took her as an ATM and were fleecing them. Finances are prime concern of every patient. One never knows how much it is going to cost as treatment does not end with surgery and chemo. It is an ongoing life long process as it requires periodic follow up checkups. But then financial worries become secondary, primary is getting an honest report and correct treatment.
It was decided to consult the best as well as go in for the second opinion. Reports were sent to Dr Banawali of Tata Hospital, Dr S Advani and flying the sample (slide) to Dr Ben in Netherland. All were of the same opinion. It had to be surgically removed. Now came the question of where? Dr Banawali ruled out Mumbai saying post-op requires frequent checkups and that travelling at regular intervals will be cumbersome. He suggested All India Medical Institute. The wait there was in months. There are various stages each patient has to go through
- Radiologist-uses diagnostic techniques as mammography, ultrasound, and minimally invasive biopsy.
- Pathologist-analyses cells to determine if the disease is present.
- Surgeon-removes the identified affected area.
- Medical oncologist decides the line of treatment depending type of cancer, affectation of lymph nodes.
A year before I was diagnosed, my domestic maid shocked me by turning up after a week of leave with reports in her hands. She had cancer in her stomach. It was a frantic search for an affordable hospital. A neighbor worked as a Surgeon in Bala ji Action cancer hospital. She got her admitted there. When I visited my maid, I was highly impressed with the facilities, the latest technology medical equipments ambience, hygiene but above all the dedication and behavior of entire staff.
But that was far from my mind when I was confronted with this problem. I took an appointment with senior most consultant at the hospital in my vicinity. Armed with the reports I was on time, but my turn came after two hours. The hospital and waiting room resembled a railway platform-it was that crowded. Instead of the senior Doctor I was supposed to meet, I was directed to his junior. He looked at the reports and asked me to get new tests done. They did not rely on tests done outside the hospital. I asked if their reports were of the same diagnosis then what would be the course of action. He summarily dismissed saying, “come back after week getting these tests done. Till then let us not waste time by talking in the air”. Waste of Time, Talking in the air, do you say that to a patient who is facing the horrendous death penalty? One can imagine how I felt. I came out crying. Others thought that my prognosis was not good news. I swore that it was my last visit to that hospital. The experience of my maid and my own observations helped me zero down on the same hospital. My trust was not belied. I was given a patient hearing by Dr Rajesh Jain and Dr Shruti Bhatia. Looking at my reports, Dr Jain said, “Neelmani, you are sitting on a time bomb, and we are here to diffuse it”. They further assured me that cancer was now a very treatable disease and the survivor rates were all-time high. They even made me meet the medical oncologist Dr J B Sharma.
I had many doubts to clear and questions to ask. I asked them whether they had time to answer and by doing so will they not be holding up other patients. Their reply really impressed me. I was told that understanding the state of mind of new patient, they always keep a substantial margin between two appointments. I had armed myself with the list of following questions and I feel every patient must seek these information in order to gain confidence and to face and fight the dreaded disease.
- Am I being told the truth and the entire truth
- Is it the end of my normal life
- Will the treatment be painful
- Will the treatment work
- What are the chances of recurrence
- The initial cost of treatment and then the subsequent cost
Most of the answers were given but certain answers, I was told could be got post-surgery as it depended on what sort of cancer I had- whether it was In-Situ (restricted to one specific area) or Invasive, spreading to other organs too. I was told that based on hundred day doubling time it usually takes a tumour 8-9 yrs to reach ½ centimeter though this cannot be taken as benchmark for all as case, differs from one person to the other. Even after years of research it is very difficult to pin point the cause. It could be genetic, smoking, environmental carcinogens virus, radiation from microwaves or mobile Towers. Causes could be inconclusive but the cure is a certainty. The Course of treatment would be decided by the surgeon and medical oncologist, whether it was going to be just local treatment (breast only or systemic (pertaining to entire body) too. Local treatment is surgery and radiation and systemic is chemotherapy and hormonal. Surgery and treatment vary from patient to patient because not only the constitution of each patient is different but also the nature of cancer, size of the tumour, potential lymph node involvement or dormant metastasis, aggressiveness or hormonal sensitivity. All depends on the stage of investigation i.e. pathological reports.
The options in my case was not between lumpectomy or mastectomy as age was against me( I was sixty) as well as there are chances that lumpectomy might require radiation along with chemo. I asked about reconstruction. Yes, that was a possibility but was not advisable as that had its own share of problems.
I tried to gather as much information about my affliction as I could. Internet is no doubt a source of immense information but as they say too much knowledge harms. As laypersons, we do not have the ability to separate the chaff from the husk. Even talking to survivors and their families does not help initially as most are living under the umbrella of fear and uncertainty. I found clarity in my session with my Doctors.
Decision was taken after much deliberations and discussions. I was given a date for operation the following week. I underwent complete Radical Mastectomy where entire breast was removed including three levels of lymph nodes .small chest muscles and lining over the chest and muscles.
Before I was discharged post-op I tried to understand the pathological reports as well as the medical parlance which I was unfamiliar with.
- The type of cancer I had
- Size of the tumour
- How many lymph nodes were removed
- Was tumour receptors estrogen or progesterone positive or negative
- Was tumour positive for HER-2
What was cell proliferations status-indicator of how fast cancer was growing at the time of surgery.
Surgery is more than scars on the body. It scars and mars one’s outlook towards life. It is easy to say be brave yet there couldn’t be better advise. The occurrence of the disease is not in our hands. Cancer is not an invited guest which has to be entertained and thought of all the time. Instead of moaning and complaining, “Why me, what did I do to deserve this, I can’t cope” we should take it as an invasion and the enemy within has to be fought with courage and fortitude. It should be taken as a battle to be won at all costs metaphorically and literally. Crying is not a weakness but is cathartic. Cry your heart out but then wipe your tears and with all your might and declare.
WE ARE FIGHTERS:
I was busy
Living my life
You crawled in uninvited unbidden
Abusing the very body you invaded
Like a terrorist
Thriving on my blood.
I am a woman
Frail I might be but weak I am not
I cried I screamed but now I smile
For I found the enemy within
I will fight you along my oncologist
till you breathe your last
I will be winner for there is no place in my life
For cowards who sneak in
– Neelmani Bhatia