New Diagnosis and the Choice of Treatment:

Oh! My arm, it is paining like hell," I cried out. Excruciating pain had woken me up. I pressed the arm, thinking I had slept on that side. I felt that the armpit and surrounding area were swollen. I recalled my dog, Ginger, had jumped on me the previous day and hit me hard on the chest while coming to meet and greet me at the gate. Taking that to be the reason, I took a painkiller. The pain did not subside till evening, so I 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. The 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 the doctor on duty. She suspected a tumor. 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 a mix-up. But the 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 question: 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 with 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. A third thought that the hospital where she was admitted took her as an ATM and was fleecing them. Finances are the 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 lifelong process as it requires periodic follow-up checkups. But then financial worries become secondary; the primary is getting an honest report and correct treatment.

It was decided to consult the best as well as go in for a second opinion. Reports were sent to Dr. Banawali of Tata Hospital, and Dr. S Advani, and the sample (slide) to Dr. Ben in the Netherlands. All agreed. 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 traveling at regular intervals will be cumbersome. He suggested All India Medical Institute. The wait there was months. There are various stages each patient has to go through.

• Radiologist-uses diagnostic techniques such as mammography, ultrasound, and minimally invasive Biopsy.
• The pathologist analyzes cells to determine if the disease is present.
• The surgeon removes the identified affected area.
• Medical oncologist decides the line of treatment depending type of cancer and, the 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 at Balaji Action Cancer Hospital. She got her admitted there. When I visited my maid, I was highly impressed with the facilities, the latest medical equipment, ambiance, hygiene, and above all, the dedication and behavior of the entire staff.

But that was far from my mind when I was confronted with this problem. I made an appointment with the senior consultant at the hospital in my vicinity. Armed with the reports, I arrived 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 me, saying, 'Come back after a week after 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 observations helped me zero in 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 defuse it.' They further assured me that cancer was now a very treatable disease and the survivor rates were at an 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 if doing so would not hold up other patients. Their reply impressed me. I was told that to understand the state of mind of a new patient, they always keep a substantial margin between two appointments. I had armed myself with a list of the following questions, and I feel every patient must seek this information 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 obtained 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 informed that based on a hundred-day doubling time, it usually takes a tumor 8-9 years to reach a significant size, though this cannot be taken as a benchmark for all cases, as it differs from one person to another. Even after years of research, it is very difficult to pinpoint the cause. It could be genetic, smoking, environmental carcinogens, viruses, or 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 (about the entire body). Local treatment includes surgery and radiation, while systemic treatment involves chemotherapy and hormonal therapy. Surgery and treatment vary from patient to patient because not only is the constitution of each patient different, but also the nature of the cancer, size of the tumor, potential lymph node involvement or dormant metastasis, aggressiveness, or hormonal sensitivity. It all depends on the stage of investigation, i.e., pathological reports.

The options in my case were not between lumpectomy or mastectomy, as age was against me (I was sixty), and there were chances that lumpectomy might require radiation along with chemotherapy. I inquired about reconstruction. Yes, that was a possibility, but it was not advisable as it had its share of problems. I tried to gather as much information about my affliction as I could. The internet is undoubtedly a source of immense information, but as they say, too much knowledge harms. As laypersons, we cannot 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.

The decision was taken after much deliberation and discussion. I was given a date for operation the following week. I underwent a complete Radical Mastectomy where the 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 tumor
• How many lymph nodes were removed
• Was tumor receptors estrogen or progesterone positive or negative
• Was tumour positive for HER-2

What was the cell proliferation 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 advice. The occurrence of the disease is not in our hands. Cancer is not a guest that 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 seen 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 declare with all your might.

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.
But
You forgot
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 with my oncologist
till you breathe your last
I will be a winner for there is no place in my life
For cowards who sneak in