When Illness Strikes: How to Get the Best Medical Care

We can now research our illnesses like never before. But whom do you trust, and where do you stop? Two women, one a cancer patient who took charge of her own drug research, the other a scientist who faced her own health crisis, show how they found their way

By Laurence Gonzales
I just didn’t like his attitude. He was very condescending." When the doctor left the room, Pollack turned to her husband and said, "I hate this place. I hate this guy. This is bad for me." She remembered the feeling she’d had in the operating room before her biopsy. They didn’t even wait for the doctor to return. They just walked out. She had never done anything like that before. "The worst part for me was feeling the burden of making a decision about my treatment when I didn’t know anything," she says. "There was always something new to read, another person I could talk to. I just didn’t know how to let go of whatever decision I made, and I didn’t know how to reach a final decision. Some people can just say, ‘Doctor, I’m in your hands.’ And I just wasn’t that person."She plunged into the literature, worked the phones, even flew around the country to get the best advice — all in a matter of a few weeks. In the end, she settled on the course that the first oncologist had recommended. But her experience of making that decision was far different from what it would have been if she’d simply taken the advice without question. Playing Doctor During her research, Pollack had read that a certain kind of woman — one like her, who was fairly young and still fertile with an estrogen-positive tumor — was at greater risk for a recurrence of the cancer. So she decided to have her ovaries removed. When she asked her doctor at Cedars-Sinai for help, he told her he couldn’t let her do that. But if there was even a chance that the estrogen produced by her ovaries was decreasing her chances of survival, she wanted them out. She’d already had two children. And those children needed her alive.Pollack spent days agonizing, meditating, trying to make the decision. She got a second opinion, and it was the same: Don’t do it. In the end, she went to the doctor who had arranged the initial biopsy for her. He’d delivered her babies. She trusted him. When she explained what she wanted, he said, "I really think it’s overkill, but if you think that it’s important for you, I’ll do it." Less than a week later, she found herself standing in front of that mirror, brushing the long red hair right off her head and onto the floor. And as she stood there looking at herself — her new self — she said, "Something switched in me at that point. I became my doctor. There were no illusions anymore. I was the doctor."Pollack had no idea that, eight years later, she’d still be her own doctor, nor that her odyssey would come to exemplify two schools of thought — one, a growing movement to ensure that medical decisions are based on the best possible scientific evidence, and another, recognizing the importance of trusting one’s own instincts about healing.Will It Work? Before my first wife, Carolyn, had breast cancer, she’d known only the traditional experience of Western medicine, in which she played the role of a supplicant. She’d go to the doctor’s office, and it would be crowded. She’d wait. Eventually, the doctor would see her briefly and pronounce what she was to do — or what would be done to her — and that, more or less, was that.When she was diagnosed in 1989, we stopped being passive and became a team. I had the benefit of some scientific training (meaning I understood doctor-speak), and she had the benefit of a strong personality and of being wicked smart. We questioned everything the doctors said. One of the things we always asked when they suggested a treatment of one kind or another — surgical, pharmaceutical, therapeutic — was, "How do you know this is going to work?" Like most people, we had always assumed that there was hard scientific evidence and rigorous testing behind any treatment a doctor would order. But there isn’t always such a solid rationale behind a doctor’s orders. Tradition, educated guesswork, or "That’s what my mentor told me" are often closer to the truth. Doctors may find the evidence confusing or even contradictory. This state of affairs leaves patients like Carolyn and Darryle groping for answers when they desperately need to figure out what’s best for them. Doctors vs. Scientists Over the past several decades, a move toward a more organized, integrated approach to medicine has begun to take shape.

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