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PATIENT/CAREGIVER CORNER
Year : 2019  |  Volume : 2  |  Issue : 2  |  Page : 169-171

Why second opinions matter - My father's journey from suffering with cancer to living with it


Race Course, Dehradun - 248 001, Uttarakhand, India

Date of Web Publication20-Dec-2019

Correspondence Address:
Mariyam Haider
Race Course, Dehradun - 248 001, Uttarakhand
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/CRST.CRST_63_19

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How to cite this article:
Haider M. Why second opinions matter - My father's journey from suffering with cancer to living with it. Cancer Res Stat Treat 2019;2:169-71

How to cite this URL:
Haider M. Why second opinions matter - My father's journey from suffering with cancer to living with it. Cancer Res Stat Treat [serial online] 2019 [cited 2020 Apr 10];2:169-71. Available from: http://www.crstonline.com/text.asp?2019/2/2/169/273681




  November 2015 Top


“This is your father's last shot at the right treatment,” the consulting senior oncologist at the National Cancer Centre Singapore told me as I sat in his office holding my father's biopsy and MRI reports. I had moved to Singapore from India, for my graduate studies, and Dad had been diagnosed with squamous cell carcinoma in the right posterior base of his tongue, a relapse after being in remission for nearly a year and a half.

Since May 2014, he had been declared cancer-free after having undergone surgery, radiation, and chemotherapy in 2013. Cancer had then seemed like a blip in our family's fate that we had successfully tackled. The relapse proved it otherwise. We were not out of the woods, but had briefly entered a clearing, enjoyed the sunshine while it lasted, and now had to walk onto an unfamiliar trail again.

In November 2015, he was advised transoral robotic head and neck surgery (TORS) by doctors at the Rajiv Gandhi Cancer Institute and Research Centre, New Delhi, which the Singapore oncologist ruled out; “It will not result in clear margins,” advising total glossectomy, laryngectomy, and thyroidectomy. While I had gone to meet him to get a second opinion, hearing him give my father an ultimatum was the last thing I'd expected. I don't remember much of that remaining afternoon, walking back through clandestine hospital corridors, discussing the costs of the treatment, and being handed NCC brochures, it seemed everyone knew what the doctor had told me, and was offering their condolences. We're sorry you had to hear that. The nurses, administration staff, medical assistants, even the cab driver, seemed to sense something was wrong.

I thought second opinions meant second chances. In this case, it had turned out to be the opposite.

“Last shot at it”– these four words rang in my ears constantly, day in and day out. I was in shock, just like Dad, who had to choose between losing a part of his tongue versus his lifelong ability to speak or eat normally. He underwent TORS in December 2015, refusing to go for the extensive surgery. Exactly 5 months later, he had a recurrence. The second opinion stood corrected.


  November 2018 Top


I heard the same prognosis again, last year.

“Immunotherapy is the last option,” said my father's consulting medical oncologist at Max Hospital, Dehradun. In the years between 2015 and 2018, varying combinations of cancer therapies had somehow managed to contain the growth of his tumor. However, by mid-2018, Dad had effectively progressed on all platinum-based and metronomic chemotherapies. With a tumor at an inoperable size, along with his low immunity owing to weekly rounds of cetuximab infusions for over 30 weeks, we had gone past any chance of cure and were simply testing one type of palliative therapy to another.

Cancer was now a part of our lives, as Dad languished with constant nerve pain every day. He could no longer continue a day without being on a dose of painkillers. Eating or drinking was a challenge, he often groaned in his sleep, and was physically getting weaker. Mouth curled, forehead tightened with worry lines, and eyes sullen, the pain left a permanent grimace on his face. Every night, I watched him shrink underneath his blanket, his bony chest rise and fall, as he tried to sleep after taking a strong dose of paracetamol and wake up with wheezing coughs.

“This would be a slow process, could take months to work, with no significant change in the size of his tumor, and potentially life-threatening side effects,” the oncologist stated when we decided to go ahead with 240 mg nivolumab-targeted therapy, on a bimonthly basis. With his situation worsening, we took the only resort being offered to us.

How long will the treatment go? When can we see signs of improvement? When should we stop the treatment? Once again, I began looking for oncologists across the globe for second opinions. Someone had to give me better answers on immunotherapy. I got a few, vague ones. If it works, continue. If you cannot afford, stop it. Yes, the risks are very high but depend on patient to patient.

None of those second opinions offered clarity, rather built more confusion. Instead of lessening the variables, more were getting added to the equation.


  June 2019 Top


Weeks passed, and my father continued getting his fortnightly infusions, not sure if they were working, not sure if he would even show any response to it. It was during that time that I read a report titled “New First-Line Option in Head and Neck Cancer: Practice Changing,” which discussed the efficacy of immunotherapy and chemotherapy given in combination, to head and neck cancer patients.[1] The paper noted that despite new results and clinical trials in immunotherapy, several questions remained unanswered. Reading through it, I was struck by an epiphany.

When the doctors were still searching for the right questions, how could I receive the right answers? I realized that I had been looking at consultations and second opinions the wrong way. I was reaching out for clear answers, for a disease that is notorious for its mutations and unpredictability. Cancer does not have a straight set of answers, because it does not have a straight set of questions. No doctor could tell me how well Dad would respond to a treatment, but discussing his case could potentially recognize some missing pieces of the enormous cancer puzzle.

Second opinions were thus an opportunity to develop a deeper understanding of the disease my father has been living with for several years, rather than chase the next best solution. His cancer had in a way, offered me an opportunity to become an active participant in the larger cancer immunology conversation, instead of simply being a passive onlooker of the treatment.

With this thought, I decided to reach out to Tata Memorial Hospital (TMH), Mumbai, to introduce Dad's case to their head and neck oncology team of experts. He had shown excellent response to the immunotherapy regime, and an MRI scan after 11 cycles of immunotherapy, showed a near-total resolution of the tumor. We were told that my father is one of the minority cases that show a hyperactive response to this treatment. The doctors at TMH physically assessed him, discussed the case with us and offered the much needed clarity and advice on planning the treatment ahead.

Immunotherapy has been making great strides in fighting different forms of cancer, leading to an increasing number of clinical trials, and drugs being introduced in the markets. So far, this year, the FDA has approved or given accelerated approval to nearly 30 immunotherapy drugs, all of which will need successful patient case studies to be introduced into wider markets, accepted under health insurance, generate more funding into cancer research and above all, help patients and their families lead better lives.

To date, cancer continues to evoke fear, misery and a fatalistic attitude amongst people who assume it to be the closing chapter of one's life. My father's journey is an example of having managed cancer for close to a decade, undergone all forms of treatments, and not let fear consume him. The more families and doctors come together to discuss and understand cancer, the more educated our society will be. Conversations like these can strengthen cancer grid networks and expert oncologists' abilities to build a larger pool of reliable clinical data. Second opinions, thus become nodal points of communication and knowledge dissemination, that can contribute in developing a holistic approach towards cancer care.

Viktor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves,” and that is what I've learned through my father's journey so far. I cannot change the way his cancer responds to treatment, but I can change the way I respond to it. My role does not end as a caregiver but stems into an observer and communicator, who can work towards building more awareness, conversation and knowledge of cancer within the medical and patient community.

A journalist by training, Mariyam Haider is a writer, researcher, and communications consultant, based in Singapore. She has previously written on cancer and caregiving for Livemint and Hindustan Times and ran a year-long cancer-positivity blog. Mariyam has also researched on public health policies in South Asia, and presented her work at the University of Oxford, National University of Singapore, and Sciences Po, Paris.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Available from: https://www.medscape.com/viewarticle/913825. [Last accessed on 2019 Dec 03].  Back to cited text no. 1
    




 

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