The Role of Patient Advocacy in Surgical Innovation



Number of words: 786

It took a Philadelphia surgeon named Bernard Fisher to cut through that knot of surgical tradition. Fisher was brackish, ambitious, dogged, and feisty—a man built after Halsted’s image. He had trained at the University of Pittsburgh, a place just as steeped in the glorious Halstedian tradition of radical surgery as the hospitals of New York and Baltimore. But he came from a younger generation of surgeons—a generation with enough critical distance from Halsted to be able to challenge the discipline without undermining its own sense of credibility. Like Crile and Keynes, he, too, had lost faith in the centrifugal theory of cancer. The more he revisited Keynes’s and Crile’s data, the more Fisher was convinced that radical mastectomy had no basis in biological reality. The truth, he suspected, was quite the opposite. “It has become apparent that the tangled web of threads on the wrong side of the tapestry really represented a beautiful design when examined properly, a

meaningful pattern, a hypothesis . . . diametrically opposite to those considered to be ‘halstedian,’” Fisher wrote.

The only way to turn the upside-down tapestry of Halstedian theory around was to run a controlled clinical trial to test the radical mastectomy against the simple mastectomy and lumpectomy+radiation. But Fisher also knew that resistance would be fierce to any such trial. Holed away in their operating rooms, their slip-covered feet dug into the very roots of radical surgery, most academic surgeons were least likely to cooperate.

But another person in that operating room was stirring awake: the long-silent, etherized body lying at the far end of the scalpel—the cancer patient. By the late 1960s, the relationship between doctors and patients had begun to shift dramatically. Medicine, once considered virtually infallible in its judgment, was turning out to have deep fallibilities—flaws that appeared to cluster pointedly around issues of women’s health. Thalidomide, prescribed widely to control pregnancy-associated “hysteria” and “anxiety,” was hastily withdrawn from the market in 1961 because of its propensity to cause severe fetal malformations. In Texas, Jane Roe (a pseudonym) sued the state for blocking her ability to abort her fetus at a medical clinic—launching the Roe v. Wade case on abortion and highlighting the complex nexus between the state, medical authority, and women’s bodies. Political feminism, in short, was birthing medical feminism—and the fact that one of the most common and most disfiguring operations performed on women’s bodies had never been formally tested in a trial stood out as even more starkly disturbing to a new generation of women. “Refuse to submit to a radical mastectomy,” Crile exhorted his patients in 1973.

And refuse they did. Rachel Carson, the author of Silent Spring and a close friend of Crile’s, refused a radical mastectomy (in retrospect, she was right: her cancer had already spread to her bones and radical surgery would have been pointless). Betty Rollin and Rose Kushner also refused and soon joined Carson in challenging radical surgeons. Rollin and Kushner—both marvelous writers: provocative, down-to-earth, no-nonsense, witty—were particularly adept at challenging the bloated orthodoxy of surgery. They flooded newspapers and magazines with editorials and letters and appeared (often uninvited) at medical and surgical conferences, where they fearlessly heckled surgeons about their data and the fact that the radical mastectomy had never been put to a test. “Happily for women,” Kushner wrote, “. . . surgical custom is changing.” It was as if the young woman in Halsted’s famous etching—the patient that he had been so “loathe to disfigure”—had woken up from her gurney and begun to ask why, despite his “loathing,” the cancer surgeon was so keen to disfigure her.

In 1967, bolstered by the activism of patients and the public attention swirling around breast cancer, Fisher became the new chair of the National Surgical Adjuvant Breast and Bowel Project (NSABP), a consortium of academic hospitals modeled self-consciously after Zubrod’s leukemia group that would run large-scale trials in breast cancer. Four years later, the NSABP proposed to test the operation using a systematic, randomized trial. It was, coincidentally, the eightieth “anniversary” of Halsted’s original description of the radical mastectomy. The implicit, nearly devotional faith in a theory of cancer was finally to be put to a test. “The clinician, no matter how venerable, must accept the fact that experience, voluminous as it might be, cannot be employed as a sensitive indicator of scientific validity,” Fisher wrote in an article. He was willing to have faith in divine wisdom, but not in Halsted as divine wisdom. “In God we trust,” he brusquely told a journalist. “All others [must] have data.

Excerpted from pages 198-200 of ‘The Emperor of All Maladies: A biography of Cancer’ by Siddharth Mukherjee

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