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

Finding a LumpThe sun streamed into her hotel room as she stood before the mirror. Darryle Pollack brushed her hair and felt her heart clench like a fist as she watched the long red curls come out in great handfuls. She wondered how much more of this she could take."Losing my hair was worse than losing my breasts," she says. "I had waist-length, wavy, gorgeous thick hair. I loved my hair." Pollack had made some big changes over the years to put her life in order. She’d quit her job as a television reporter in Los Angeles. She’d divorced and remarried and endured a night of terror during the earthquake of 1994, running barefoot over broken glass to rescue her two children. The newly combined family moved to a house in Carmel. After a difficult transition, things had settled down at last. She was doing marketing for her new husband’s health-supplement distribution company. Life was good.Then, one bright Friday morning just before the Fourth of July, Pollack was taking a shower, thinking about the busy weekend ahead, her son’s 7th birthday party, and there it was. Just like that: a lumpy mass in her right breast, slick with soap beneath her index finger. Something inside her that didn’t belong. Where had it come from? How long had it been there? She’d had a mammogram only eight months before. She went to work, thinking, well, it’s probably nothing, but it needs checking. She called the only mammography clinic she found in the phone book. To her surprise, they wouldn’t see her without a doctor’s order. It struck her as ridiculous. She’d moved to Carmel less than a year ago, and didn’t have a doctor yet. She needed someone to look at this — now. Pollack went to a neighbor who was an orthopedic surgeon, and he ordered the test. Her son’s party didn’t give her much chance to worry that weekend. She went to the clinic Monday and thought it odd that they asked for a second film. Still, she felt no real sense of alarm. Only later that night, when she saw her neighbor standing at her front door with the film in his hand did she feel the fear, liquid and trembling, settle in her stomach.Misdiagnosis? They sat on the couch in the family room, and he spread out the films. He said he didn’t know much about breast cancer, but if she were his wife, he’d get her to a surgeon. "My immediate feeling was: They made a mistake again." Again meaning her mother, who died of cancer after a malignant melanoma was misdiagnosed. Two days after her mammogram, Pollack was on a plane to Los Angeles, having arranged a surgical biopsy through her former doctor.She found herself sitting on an operating table in the white light of a cold steel room wearing a hospital gown, "and I really didn’t have a good feeling about the surgeon," she says. "It was a gut feeling, my personal reaction to him." Pollack didn’t like the way he spoke to her husband before addressing her. In less than 48 hours, she felt her body, her autonomy, had been taken from her. Nothing catastrophic happened — not a very good scar, but that wouldn’t matter soon: The biopsy was positive; she needed a mastectomy. Still, she resolved that it would be the last time she’d passively allow medical professionals she didn’t know or trust to dictate what happened to her. "I’m a good girl," says Pollack, who is now 55. "I always follow the rules." But now there was too much at stake. And it felt good deciding to take charge. It felt right. Finding another surgeon was simple compared with what lay ahead. There were several types of cancer in the same breast, and the disease was clawing into her lymph nodes. Soon she had an oncologist (whom she liked and trusted) telling her what he thought she should do by way of chemotherapy, recommending a slightly higher than normal dose. But there was a debate going on at the time about whether an even higher amount was better, and neither Pollack nor her oncologist could be sure how much would be enough."Almost immediately, I had to become an expert on high-dose chemotherapy," Pollack says. She began calling all over the country to researchers at Duke University, UCLA, Sloan-Kettering, to learn more. "Basically, this was my full-time job."She visited a prominent oncologist at UCLA who looked at her file and recommended that she quickly enter a high-dose program. "He scared me so much. 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. In the ’70s, three British obstetricians began a groundbreaking and monumental project that would be published in 1989, titled The Oxford Database of Perinatal Trials. Using a volunteer workforce to catalog decades of research, it showed which of the many types of care were unequivocally effective during pregnancy and childbirth. Electronically searchable, it gave clinicians, for the first time, the ability to practice what is now being called evidence-based medicine. That effort led in 1993 to the establishment of the Cochrane Collaboration, a vast, multinational project designed to bring the same rigorous standard of evidence to every field of healthcare.The ramifications of such a database for patients are enormous. But the effort is not without controversy. In the fall of 2001, for example, a Cochrane analysis suggested that the available evidence from clinical trials did not show that regular mammograms save lives. "The whole flap about mammography is really a culture clash," says Kay Dickersin, director of the U.S. Cochrane Center and an epidemiologist at Brown University, whose specialties include women’s health and issues of bias in scientific research. "It’s public-health scientists versus doctors. The scientists rely on data grouped together from populations, such as the percent of women who’ve had mammograms and survived, while doctors and patients are most interested in how the individual patient fares. And it’s very hard for those two cultures to meet, because the individual might say, ‘Look, I’ll take any chance to have this detected early, and I don’t care if your data show that earlier isn’t necessarily better.’" That, of course, was the dilemma Darryle Pollack faced. On the one hand, she wanted to know what treatment had been shown to work; on the other hand, she wanted to be in collaboration with someone who respected her right to choose — even when the evidence, and her subsequent treatment choices, seemed to be in conflict. Evidence"Evidence-based medicine is not just practicing on the basis of the evidence," Kay Dickersin insists. She uses the example of tamoxifen, a drug that has been shown to increase the chances of survival for most breast-cancer patients, to explain this seemingly contradictory statement. Logic might dictate that, because the evidence says it works, it’s right for everyone. But that would be "cookbook medicine," a phrase used in criticizing the movement by people who fear that once a course of treatment is shown to be effective, everyone will be expected to accept it without question. Evidence, says Dickersin, is simply one element of what she prefers to call "evidence-based healthcare." "Other important components are patient values, physician values, physician knowledge and experience." In other words, a collaboration in which the patient and the doctor both have access to the best clinical evidence for what works and what doesn’t, and then decide together what course to take.In fact, Dickersin, now 53, was diagnosed with breast cancer herself in 1986 and was told to take tamoxifen — and refused. Her decision was based on a knowledge of the evidence as well as a knowledge of herself. "At some point I did seriously consider it," she says. "I elected not to do it because … Ahh …" She paused and sighed, as if this were difficult for her to admit. "I don’t like to take pills, so I just thought I was likely to become a noncomplier at some point because I did not view myself as, nor did I want to view myself as, a sick person. And I didn’t want to go into menopause at 34. Other women may have the same feelings but not make the same decisions. I’m a risk-taker in some situations, and this was one of them." She had come to the heart of the matter: When taking care of your own health, you have to be human and you have to be yourself. A good doctor will respect your feelings and allow you to walk your own path with dignity. Dickersin had such a physician: "My doctor didn’t say, ‘You’re crazy.’" Dickersin had three types of cancer in one breast, which were treated first by lumpectomy and then mastectomy a few weeks later. Her doctor told her that she had the option of "watchful waiting" with the other breast. But Dickersin knew that one of those three types of cancer had a tendency to spread. "And I mean, I was really scared to wait." In the end, she said, "Okay, I’ve had it. I’m not going to have biopsies forever. I’m too young." Though it showed no sign of cancer, she had her other breast removed.Evidence-based healthcare, then, contains this seeming paradox. Having scientific evidence is, of course, better than not having it. But Kay Dickersin would argue that evidence encompasses more than, say, mortality rates. Psychological factors, such as the debilitating stress from repeated treatments and health scares, can be just as crucial when making a decision. Knowing the evidence is good. Knowing yourself is better. Knowing both is best. Demanding Change Like Kay Dickersin, who is now free of cancer, Darryle Pollack eventually decided to have her other breast removed as a precaution. Both women sought treatments not recommended by their physicians, because these were the paths they felt most confident taking. Being your own doctor can be hard at a time of extreme vulnerability. But believing that you are in control can actually be good for your health. Robert Sapolsky, a MacArthur Fellow famed for his research on stress, points to studies in which two groups were exposed to the same stressful stimulus. One group was led to believe it had some control over the stimulus — a lever to pull, a puzzle to solve — while the other had nothing to do. The stress levels in the first group were far lower, despite the fact that their actions had no real effect. The point was, they were doing something. Dickersin wears a button that shows the yin-yang symbol. On one side of the symbol it says, "Trust me, I’m a doctor." On the other side it says, "Ask me about the evidence." She believes that if the practice of healthcare in this nation is going to change, it will be because people like Pollack demand a better quality of evidence and more control. "I do think the consumer can know enough to understand evidence-based healthcare. And that there’s good research and bad research. And to [learn to] ask the doctor questions." This spring she is meeting with consumer groups, her Cochrane collaborators from abroad, and others to design a course that will teach people how to apply evidence-based healthcare principles on their own. When It’s OverWomen who have had breast cancer often discover that when the surgery is over, the chemotherapy done, the radiation finished, they face an unsettling void. This is essentially what Pollack encountered when her radiation was finished. "They tell you basically when you’re done, well, you can take tamoxifen, and good luck; let’s hope you don’t have a recurrence, bye-bye."She continued her intensive research, at last finding doctors willing to pick up where the others left off: Mark Renneker, a physician in San Francisco who employs a "patient-directed" approach, and Keith Block, whose oncology practice in Chicago combines traditional therapies with diet, exercise, and other techniques. In addition, the broad net Pollack had cast brought her news of a long-term trial being conducted at Finch University of Health Sciences/The Chicago Medical School (now known as Rosalind Franklin University of Medicine and Science). A doctor named Georg Springer, heir to the German publishing giant Springer-Verlag, was motivated to use his own money to develop a vaccine when his wife contracted breast cancer. He had discovered certain antigens in cancer tissues that don’t occur in healthy tissue. By developing a vaccine to produce antibodies against those antigens, he believed, he could stimulate the patient’s immune system to prevent a recurrence of breast cancer. That was the aim of the clinical trials he began in 1974 at two locations in Illinois. According to a 1995 report of results, of 19 original patients, all survived for at least five years, and 11 had survived for between 10 and 18 years. The number of women enrolled in the study eventually grew to more than 100, and the U.S. Food and Drug Administration granted the vaccine approval as a Compassionate Investigational New Drug. Still, the trials remained controversial because there was no control group against which to measure results. In other words, the research would not meet the Cochrane standards. But when Pollack read about the trials, she believed that the vaccine might help her survive. Her main concern was that she’d have to fly to Chicago every few weeks to receive the vaccine for the rest of her life. "I really had to think about that, because that was a big commitment." But she read the consent form, and saw that it promised to keep her on the vaccine "ad infinitum." She decided that her own commitment should match theirs. "I thought, if I want to live, what’s the big deal? I go to Chicago." She was accepted into the program in May 1996. Pollack’s course was set. The intense days and nights of search and research were over. She made changes in her life involving diet and exercise, and felt at last that she had her health back under control. And indeed, it seemed to be for the next seven years. The women in the trial, who were scattered across the country, formed a coalition to keep in touch. For the first time in years, cancer didn’t occupy Pollack’s every waking thought. She returned to her work and family and made regular trips to Chicago for the vaccine. Her health was good.Then Pollack began to hear rumors that the medical school was not really supporting the vaccine. After Springer died in 1998, the school began laying off the staff of Springer’s lab, and by 2003, almost everyone was gone. By the fall, she heard that the program might be cancelled. "I didn’t believe it," she said. "There’d been rumors before." But in February 2004, each patient received a letter from the medical school saying that the trial had been cancelled. After three decades, the late Dr. Springer’s work was over.Now Pollack and her medical consultant Mark Renneker began trying to figure out how she could get the vaccine. "I’ll never know whether or not the vaccine is what’s keeping me alive," she says. "But I just want to keep doing it, because I believe it is." Her doctor found a way to have the vaccine made abroad. But she began thinking about the other women. What would they do? Not all of them would be able to afford to go abroad and have the vaccine made. She also felt that this was one of the few protocols that could fill the vacuum left when women with breast cancer finish their chemotherapy and radiation. She decided at that moment to try to get the vaccine back, not just for herself, not just for her group, but for others, as well.Legal ActionThere are some complex issues tied up in Pollack’s decision, which was not strictly scientific, not strictly rational, but grew out of a blend of rational and emotional motives. Recent neuroscience has shown that so-called "gut feelings" are real elements of our ability to make good decisions. We can take in large amounts of information — too large to remain in consciousness — and use it to reach valid conclusions, all outside the normal process we call reason. Pollack couldn’t prove that the vaccine was effective. But the medical school had promised to provide it indefinitely and, perhaps more important, the vaccine gave those women an answer to the question: What do I do for the rest of my life? In her gut, she knew that she was onto something with the Springer vaccine. She felt that the school officials would listen to her and keep the trials going long enough to let the women find an alternative. Being a TV reporter, she could also envision a group of 50 breast-cancer patients marching with signs in front of the medical school, and thought surely the school wouldn’t want that. When the school remained unresponsive, Pollack found a lawyer in Chicago, Robert Cummins, who was willing to negotiate on behalf of the women. When I spoke to him, Cummins said, "When I first heard the story, it seemed incomprehensible. No reputable medical institution could possibly shut the door on these women."Cummins set up a meeting with school officials; they were very cordial, and gave Pollack the impression that they’d strongly consider her proposal. She left the meeting convinced that she’d get her next dose of the vaccine, which was already overdue, within weeks, since there was an unused supply on the shelf. Then she learned that the school had already notified the FDA that they were closing down the program. It was as if Georg Springer and his vaccine had never existed. Going to Court In the summer of 2004, Pollack and Cummins sued the Chicago Medical School (CMS) on behalf of the 50 women in the Springer trial for the right to take over the research and whatever remained of the roughly $18 million Springer had left to support the program. At the time of the suit, Patrick Coffey, a lawyer for CMS, reiterated what numerous doctors and scientists had said of the trials. He told a news service, "There was an absence of information that allowed us to say this was valid science and that it was providing a benefit to those human beings involved." In court that fall, Michael Schrift, a psychiatrist and head of the school’s review board, was pressed repeatedly by Cummins about why CMS had shut the research down. Schrift testified that the school had acted properly in canceling the program, and that it did so because the vaccine had not proven effective, nor could its safety be adequately determined. The women, he suggested, had placed false hope in the vaccine, believing "it was treatment, where in fact it was research."Wayne Jonas, MD, director of the Samueli Institute, a nonprofit medical research organization, had his own wife enrolled in the Springer trial, and testified for the plaintiffs. "The science is not perfect, there’s no question about it," he says now. "But this is the longest human breast-cancer vaccine trial in the country, and probably in the world." And, according to Jonas, "An independent comparison [found] the overall survival rate for women on the vaccine was 30 percent better than for those who were not." The case settled quickly. "The University believes that the prior decision of its Institutional Review Board regarding the T/tn [Springer] vaccine study was correct," said Robert Vogt, an attorney for the school, in a press release issued at the time. But the school agreed to pay the cost of pursuing FDA approval at another institution, and to turn over all research materials, including the vaccine, to the women, in addition to an undisclosed amount of money from Springer’s bequest. (School officials declined to comment directly for this article; their press representatives referred instead to the aforementioned press release.) The women and their lawyer, Cummins, are now seeking a new home for the Springer vaccine trials. But Pollack’s long fight left her feeling as if she had so much more she could do for others. "It sounds really hokey," she told me, "but I felt like I’ve been put in this position where I can do something that could make a difference." She decided to start her own foundation, with the support of Springer’s daughter Julia Tolkan, who watched her mother die of breast cancer, to continue and broaden his work and support other research. The idea is in its early stages and she isn’t sure what it will encompass, but she wants to give women a stronghold from which to defend the right to control their own healthcare. "I’m not a religious person," Pollack told me. "I’m not even particularly spiritual. But I feel like it was my turn to do something." It was a turning point in her survival story. In her first year after diagnosis, she had to stay in the moment, focused on her physical survival. In her fight to get the vaccine trials continued, she was battling for her group. That victory was behind her. Now she looked forward to a new way to struggle meaningfully for something larger than herself. Because the struggle itself is important. Too much stress can hurt you, but too little can, as well. Even animals know this. The fruit gained through struggle is always the sweetest. In laboratory experiments, they’ll choose food they have to work for over what’s freely given. The last time I spoke with Darryle Pollack was at her art studio in Carmel. When she was finishing her chemotherapy, facing the unknown, she began painting ceramics in a small shop at a mall near her home. "In school I was always a whiz at history and English, but when it came to art, I was absolutely remedial," she explained. But somehow the clay and glazes just spoke to her as she sat at a workbench with the sunlight streaming in through a big picture window. As she worked over the years, she inevitably broke a few pieces. She saved the fragments and started making mosaics. She liked doing that so much that she began painting ceramic tiles specifically to break them. She rented a vacant shop in the mall and turned it into an art studio. We walked over from the ceramics shop, and she showed me her work — large, impressive pieces with dramatic designs. There were mirrors, tables, and bowls decorated with tile fragments and often with words, such as "lucky," "hope" and "happiness" hidden in the designs. She locked up her studio, and we walked to lunch along the tree-lined, sunlit lanes. I asked her what her artwork meant to her. Although it was clearly marketable, she said she didn’t want to sell it in galleries. "I think I like it because it tells so much about my story," she said. "Or anyone’s life, for that matter. Life smashes things to bits, and you put it back together and make something beautiful with the pieces." Healthcare Data on Demand?Researching an illness and evaluating your choices can be an overwhelming task. The Cochrane Collaboration, an international nonprofit organization, is reviewing all available medical evidence and working to make that information available to the consumer. What is it? More than 11,000 contributors worldwide — healthcare professionals, researchers, consumer volunteers, and others — comb through medical literature as far back as World War II in more than 50 subject areas ranging from lung cancer to strokes to palliative care. The data is then analyzed to see which treatments are truly effective. More than 2,000 studies are complete (with more in the works), and will be updated as new evidence accumulates. Who can use it: Abstracts are available free online, but to view the full reports, individuals must pay $265 a year for a Cochrane Library subscription (single report views start at $25). Citizens of several countries, including England and Australia, can use the database without charge because their governments subscribe. Most academic medical institutions in America subscribe; the state of Wyoming has purchased a subscription for its residents. Where to find it: Online, www.cochrane.org.

First Published Mon, 2009-04-06 17:20

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