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Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [45]

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not. He did not immerse himself in data. Rather, as an outgoing and social man, with what he called “an amazing network of people” in Los Angeles, “I decided to delay the surgery and started talking to everyone I knew about prostate cancer.” He felt no hesitation in telling friends and colleagues that he had been diagnosed with prostate cancer, to connect with other men who had the same condition, and to draw from their personal experiences. Steven found that an older psychiatrist with whom he’d trained had been diagnosed with prostate cancer and had begun a blog to detail his experiences. This older man had had radiation therapy, and then several years later the cancer recurred. Now he was receiving hormonal therapy to treat the metastases. “You can live with it, Steve. It’s not a death warrant,” his former mentor told him. Another of his mentors, also diagnosed with prostate cancer, chose watchful waiting and was doing well. He recommended that Steven seek a second opinion with his doctor at a different hospital nearby.

“My father died at that hospital,” Steven told us. “So my unconscious voice was telling me, ‘You go there to die.’ I realized that kind of stuff is not really pertinent, that just because my father died there doesn’t mean that the doctor and the care at that hospital would not be excellent.”

Using his “network,” Steven found a urologist who was expert at laparoscopic robotic surgery, the procedure that Matt Conlin ultimately chose. This doctor laid out in stark terms the pros and cons of the different surgeries. He pointed out that a recent analysis comparing traditional open surgery with laparoscopic prostatectomy concluded that the side effects of impotence and incontinence were essentially the same with both. The main advantage, he contended, was that the recovery time was faster with a robotic procedure. “He just gave me the facts, no reassurances,” said Steven. “He was very much the opposite of the first urologist.

“In fact, he was brutally honest—he said there is about a 50 percent chance of getting erectile dysfunction. And at that point I thought, What the hell is erectile dysfunction? Does that mean you will never have an erection again? Does that mean that you are only a little soft but still can make love?”

Steven Baum said that in psychology, you learn never to assume that you heard the “message” correctly. “It’s the notion that someone is telling you one thing, but you are hearing another. When he said 50 percent of men get erectile dysfunction, my assumption was that 50 percent will never have sex again in their lives. I really like sex, and my wife also really likes sex. It’s a big part of our life.”

Steven had identified an important gap in communication between doctor and patient. The language and terms used by physicians can mean something quite different to a patient or have no clear meaning at all. This has been highlighted in studies of many disorders. With regard to prostate cancer, a team of experts led by Dr. Timothy Wilt at the University of Minnesota reviewed more than seven hundred papers in an effort to determine which therapy was superior and caused the fewest side effects. They could not conclude that surgery, radiation, or watchful waiting was clearly best for men with prostate cancer. One major hurdle Wilt and his colleagues faced was that they couldn’t discern what different research groups “meant” when they described erectile dysfunction—or, for that matter, urinary or rectal incontinence. Even the doctors doing research and caring for patients could not agree on a uniform definition of these conditions.

Steven Baum reflected on his reactions to the two surgeons. The first surgeon reinforced the side of Steven that wanted to believe, and the second one amplified his sense of doubt.

Steven understood that he was in a “hot” frame of mind when he saw the first surgeon. Frightened and anxious, he was ready to sign on immediately, as was his wife, to surgery. But by the time he’d arrived for his second opinion after reading and talking to others, he was “cool” and better

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