Gain of Function: Empathy for the Uncertain Patient With Cancer
Authors: Mark A. Lewis
Journal: Journal of Clinical Oncology (2011)

DOI: 10.1200/JCO.2011.35.1122 The news came from the embassy. Chest x-rays were performed on all immigrants to screen for tuberculosis, and my father’s was markedly abnormal. A theologian with a masterful command of language, he would later write of “a tumorous excrescence of considerable magnitude and menace.” But he described it to me, in terms comprehensible to his 8-year-old child, as a pineapple-sized cancer occupying much of his right lung. I never saw the chest x-ray, but its opacity cast a long, unwelcome shadow over my family’s new life in the sunny American South. We were unsettled in every sense, inhabiting a sparsely furnished house while we awaited my father’s curative-intent resection. Like his unseen metastases, our belongings were still in transit. The discovery of a lung tumor in a lifelong nonsmoker (indeed, a teetotaler) elicited the expected gasps of surprise from his peers and, from his son, misplaced moral outrage. It was simply “unfair” that a devout, clean-living man of God could develop cancer, especially a type so causally linked to the vice of smoking. To his credit, my father never asked “Why me?” but rather “Why not me?” Amid all the accidents and disasters that gave no premonition of impending death, why was he permitted the luxury of a warning? He used his time—the time between initial diagnosis and recurrence, between surgery and palliative chemotherapy—wisely. He died after finishing his life’s work, relishing his friendships, and sharing his love with his wife and son. Directing his energies so purposefully, he gave only fleeting thought to the etiology of his disease. But questions of cause and effect lingered in my mind. It would be dishonest to say that my own faith was not profoundly shaken by my father’s disease, all the more so when my clumsy prayers for an explanation received no discernible reply. Even while he was still alive, I searched for answers in science. My first literature search involved desperately rifling through encyclopedias in the school library, hoping to find some crucial fact that his doctors were overlooking. Such an epiphany was not to be found in the Britannica’s elementary account of cancer. During the years of medical training that eventually followed, I came to appreciate the difficulties of establishing a diagnosis, let alone definitive causation. The analogy between medicine and detective work resonated strongly with me as I assembled the facts of a clinical presentation to identify the culprit illness. In my own private investigation, I had no access to my father’s discarded records, but I accrued details of his case from my mother’s recollections. I learned that he had been inexplicably hypercalcemic throughout adulthood. I discovered that the histology of his lung tumor had not been adenocarcinoma but atypical bronchial carcinoid. And then my paternal uncle died from complications of a pituitary macroadenoma, another cruel twist of fate that I could not rationalize. At the beginning of medical school, I succumbed to the same temptations of hypochondria as every other student awoken suddenly to the frightening vastness of human pathology. While joking with my friends that every nosebleed presaged some exotic hemorrhagic fever, it never occurred to me that the explanation for my father’s disease would arrive through a process so prone to folly as self-diagnosis. The answer first appeared not in front of my nose, but on it. During residency, small fleshy papules erupted on my face, which a wise dermatologist diagnosed as angiofibromata. These red spots remained merely an affront to my vanity until the day before I started oncology fellowship, when I awoke with right lower quadrant pain so severe I was convinced I had appendicitis. In fact, there was no surgical emergency, and a subsequent visit to the internist revealed that I too was hypercalcemic. Suddenly, the hereditary connection became clear to me. I beseeched my internist to order the necessary tests and consultations to confirm my suspicion. Adenomas were found in every parathyroid gland, islet cell tumors were seen on endoscopic ultrasound of my pancreas, and I had a frameshift mutation in chromosome 11q13. Multiple endocrine neoplasia type 1 explained everything. My interest in oncology long predates my diagnosis with a familial tumor syndrome. I had been drawn to the field ever since watching my father’s doctors tend to him. Neutrophil counts rebounded as if by magic when they administered filgrastim. My father’s intractable nausea—until then, the bane of our tense, hushed meals around the family dinner JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 29 NUMBER 22 AUGUST 1 2011