Data Driven Doc: Staying Informed on the Diagnosis (Part 1 of 2)

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I’ve been told the events of the first time so many times, that I have a vivid memory of it now. My fathers mother, Bhuma, succumbed to a recurrent brain tumor that kept growing in the small confinement of her skull. When she was first admitted to a small hospital in Massachusetts, confused after a fall, my father was not at her side. My aunt had driven her to the hospital, and first received the news of impending brain surgery. But without my father around, my aunt couldn’t let my grandmother know. Bhuma was a woman who was in exquisite control of her world and those around her. To know that she was losing that control in a strange land would unravel her deeply, thought my aunt. Could she undergo surgery without knowing why?

Although common in South Asia and other parts of the world, this idea of keeping a diagnosis secret from the patient, especially one who needed a surgery, was foreign to the surgeon. As the story goes, my aunt stood between the surgeon and my grandma, and refused to translate a word of his English into her Tamil. The standoff continued until my father got there the next day.

Once my father arrived, my aunt gave up her shield to him. The energy of my family was spent in understanding the prognosis and explaining it to my grandmother. It did not occur to them to explore what treatments to do and in which sequence. It was 1989, and the trust in the surgeon was much higher than the trust in the patient.

After much reassurance from the surgeon, and not much understanding, my family consented to neurosurgery. The tumor was incompletely removed, and treated almost too conservatively. It came back again and again until there was no radiation or surgery that would stay it’s course.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone, and what sense of acceptance and calm allowed her to continue through the storm of medical care that pursued her the rest of her life. For a woman who consistently went out of her way to ensure that even her neighbors had their lives in order, the loss of autonomy and empowerment might have been frightening.

I often wonder what Bhuma thought of all the medical decisions she relegated to her surgeon alone.

Many years later, cancer found my family again. Freshly graduated from Stanford Medical School and an intern at UCLA, I felt ready to assume decision making for my father. When we were initially debating surgery vs radiation for early prostate cancer, I did exhaustive searches of the published research and expert reviews. I understood the side effects and the tradeoffs extremely well. My father became integral to the decision making. We made a calculated choice to go for surgery. My father strongly preferred to have the cancer out, and to have radiation available as a salvage option. The evidence and guidelines supported either choice, although each expert still had their preference in the matter. We were confident we had made the right choice.

So when my mother called me with her early online access to dad’s pathology report – I was saddened and grateful at the same time. The tumor was more aggressive than we thought, a Gleason score 9 instead of a 6, was not early and limited to the prostate but had invaded the surrounding tissues, and the margins were positive. There was still some of that cancer left behind.

We certainly would not have known this information without a surgery. My dad was in the small percentage of patients where the preoperative imaging and biopsies had not picked up the full extent of the disease. It was a lucky alignment of our decision and hindsight.

-Dr. Naresh Ramarajan

Online Expert Opinion: www.Navya.Care
Tata Trusts: tatatrusts.org LinkedIn Facebook  Twitter
Tata Memorial Center: tmc.gov.in  Facebook
Navya: navyanetwork.com  LinkedIn  Facebook  Twitter

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