Breast Cancer: Why Where You Live Matters

NOT EVERY WOMAN HAS ACCESS TO THE BEST TREATMENT. SELF INVESTIGATES.

There's isn't much to be thankful for when you get breast cancer, but Francie Coulter knows she may be one of the lucky ones. When the 39-year-old was diagnosed two and a half years ago, she found terrific doctors, a state-of-the-art hospital and a high-quality chemotherapy infusion center—all less than 10 miles from her San Francisco Bay—area home. The top-notch care began with her own gynecologist, whom Coulter saw after finding a lump high up on her breast near her armpit. Her doctor sent her for a mammogram and ultrasound that same week. The radiology report was inconclusive; to be safe, Coulter kept her appointment for a breast biopsy and got the bad news: She had cancer.

"I found out that I had a stage II tumor; it had spread to 9 out of 21 of my lymph nodes. But my breast surgeon said we still had choices," Coulter remembers. That surgeon was Andrea Metkus, M.D., at Mills-Peninsula Health Services in San Mateo, California, and she carefully talked Coulter through the options. She detailed the difference between mastectomy and lumpectomy—removing the entire breast versus only the cancerous lump and surrounding tissue—and explained that some mastectomies and nearly all lumpectomies require follow-up radiation and sometimes chemotherapy. Coulter also learned that because of the size and location of her tumor, "I was pretty much the ideal candidate for lumpectomy." That appealed to her, in part because she could keep her breast but also because the recovery time would be faster (about seven days compared with several weeks for a mastectomy). So when Dr. Metkus said that if she were in Coulter's position, she'd choose the breast-conserving lumpectomy, that's exactly what Coulter did.

"I knew I'd need chemo to have the best shot at survival. I wasn't thrilled about losing my hair, but sometimes, you've got to do what you've got to do," Coulter says. She missed only a week of work, then, a month later, began six months of chemotherapy, followed by nearly six weeks of radiation. "The hospital where I did the radiation was close to work, so I could come into the office after my appointments," she says. For chemotherapy, Dr. Metkus recommended the infusion center at California Cancer Care also in San Mateo. "The treatment rooms all have recliners to lie on while you're hooked up to the IV, with sunlight streaming through the windows," says Coulter. "They gave me blankets, books, anything to make me comfortable. I could even have taken yoga or gotten a massage. It was definitely a nurturing environment."

Coulter happens to live in a large urban area known for, among other things, its busy teaching hospitals. But if her home was, say, northern Michigan or North Dakota, her experience might have been very different. A range of studies suggest that geography may play a surprisingly influential role in the way breast cancer is treated. Statistics from the mid-1990s, the most recent available, show that in certain states—especially ones where there are fewer hospitals and a more widely dispersed population—breast-conserving lumpectomies are done far less frequently than mastectomies. One such study in the Journal of Clinical Oncology in 2001 found that while lumpectomy is more commonly performed on eligible women in the Northeast (54 percent) and Pacific regions of the United States (47 percent), it is done less often in the South (32 percent) and Midwest (37 percent). In a 1998 report in the same journal that compared those two surgeries in Massachusetts and Minnesota, nearly 75 percent of eligible women in Massachusetts opted for lumpectomy, while in Minnesota, slightly less than half did.

"Pretty much everybody, from the surgeon to the radiologist to the nurses, recommended that I have a mastectomy," recalls Cathy Palmer, 46, an Urbandale, Iowa, mother of three who was diagnosed with breast cancer two years ago. Palmer, whose stage I cancer hadn't spread to her lymph nodes, says her doctors advised her that lumpectomy was also an option, but went on to explain that because of the position of her tumor, near her nipple, achieving good cosmetic results would be difficult. "They also said that because I was young, and younger women tend to get more aggressive forms of the disease, I was at greater risk of it coming back." That reasoning helped persuade Palmer to go with the more drastic choice. "There's no doubt that for some women," says Julia White, M.D., an associate professor of radiation oncology at the Medical College of Wisconsin in Milwaukee, "mastectomy is absolutely the best option."

Women treated at big hospitals are up to 60 percent more likely to be alive in five years.

Every woman's case is different, of course. But the fact remains that when it comes to long-term survival, study after study has shown that, for patients eligible for both procedures, mastectomy isn't any more effective than lumpectomy. Two separate articles in a 2002 issue of the New England Journal of Medicine reported that women who were treated with breast-conserving surgery plus radiation therapy were as likely to be alive and disease-free 20 years later as women who had a breast removed. Diana Zuckerman, president of the National Center for Policy Research for Women & Families in Washington, D.C., believes that in the real world, the kind of treatment a woman ends up with may have less to do with her specific diagnosis than with a host of nonmedical factors such as income, health insurance and where she lives. "Depending on where women go for care, even those with the exact same diagnosis are likely to get different recommendations," Zuckerman says. "Something very serious is going on here."

A key factor in the treatment gap: women who don't live in urban areas, with their concentration of high-volume teaching hospitals, may have to rely on physicians who aren't familiar with or who don't offer the most up-to-date techniques. The Journal of Clinical Oncology report found that the bigger and busier the hospital, the more likely its doctors were to do lumpectomies over mastectomies: Lumpectomies were performed 14 percent more often at community centers handling larger numbers of cancer cases and 59 percent more frequently at teaching and research hospitals. "Teaching institutions are forced to stay current because of their role in educating doctors and investigating new therapies," says Dr. White, a coauthor of the study. Academic institutions are also more likely to give patients the opportunity to be in clinical trials, which offer access to the latest research and medications. The trouble is, in some states, clinical trials are few and far between. In California, there are currently 63 breast cancer trials actively enrolling volunteers, according to the National Cancer Institute; in Idaho, Alaska and Wyoming, there are six, one and none, respectively.

"It can be tough for women in small communities to find a doctor who really understands all the options," says one expert.

More worrisome is a 1998 study in the American Journal of Public Health that suggests that even after for a patient's age and stage of cancer at diagnosis, women treated at centers that do 150-plus surgeries a year fare far better than those at smaller community hospitals: They're up to 60 percent more likely to be alive in five years. The study authors theorize that women treated at higher-volume hospitals may be more likely to be referred to oncologists knowledgable about the best course of treatment post-surgery, giving their patients a survival edge. "Overall, when it comes to following any number of standards for treatment, community hospitals with small cancer centers tend to be slightly less compliant," Dr. White contends.

Similarly, "It can be tough for women in small communities to find a doctor who really understands all the options," notes Barbara Bowers, M.D., a Minneapolis oncologist who also works in a clinic two hours outside the city. "A doctor or nurse might say, 'You can have a lumpectomy or a mastectomy,' but maybe they can't answer every question about the follow-up radiation. And if someone can't tell you that you'll probably need 30 radiation treatments and how much time that takes, or describe the side effects, that's bound to shape your opinion of the various options. The lumpectomy becomes the unknown."

Zuckerman adds, "Sometimes, a hospital might not even tell a woman that lumpectomy is a safe option for her." Indeed, in the 1998 comparison of breast cancer treatment in Massachusetts and Minnesota, 27 percent of the midwesterners who underwent mastectomy said their doctors did not discuss lumpectomy with them; in Massachusetts, it was only 15 percent. "When we look at geography, there is no good explanation for certain regional discrepancies. You can't help but suspect that some patients aren't getting the full message," Dr. White contends.

That's too bad, since it's clear that hearing the facts influences the kind of treatment women ultimately choose: A 2001 study of older Colorado breast cancer patients, published in the Archives of Surgery , found that when patients were given more information about their choices, they ended up opting for lumpectomies more often.

Of course, not everyone has the luxury of living near—or being able to get to—teaching hospitals chock-full of specialists. That lack of mobility also influences women's treatment decisions. Because lumpectomies are generally followed by a course of radiation (typically five days a week for up to seven weeks), patients in rural areas may end up choosing mastectomy just to avoid the hassle and hardship of traveling to and from faraway radiation centers. A 2002 report in the Journal of the American Medical Association notes that only 14 percent of patients who lived more than 45 miles from a radiation facility opted for lumpectomy— a third of the national average at the time. "Certainly, distance is something that women have to carefully weigh in their decision-making process," says Dr. Bowers. "For some, driving two hours every day to get to the nearest radiation facility simply isn't possible."

Geography can shape breast cancer patients' experiences in more subtle ways, as well. "Researchers who've studied the phenomenon of regret have found that most patients don't second-guess their major medical decisions," says Megan Cooper, editor of the Dartmouth Atlas of Healthcare. "They really need to believe their doctor was right." Some experts suspect that, as a result, when M.D.s steer women toward mastectomy over lumpectomy, for instance, those patients, feeling sure they've made the right choice, go on to convince others that mastectomy is the smartest thing to do, spreading the message in the community at large. Friends' opinions matter, too. Certainly, in her circle, Cathy Palmer heard more voices for mastectomy than against. "Most of my friends said, 'You have cancer growing in your body—you wanna get it out!'" she recalls.

Yet above all, doctors continue to be a woman's main source of information about treatments—and overwhelmingly, women listen to what they say. In the 2001 study of Colorado breast cancer patients, 61 percent of the time physicians recommended one procedure over others—and 93 percent of patients acted on that advice. It's also telling that of the patients in Minnesota and Massachusetts who were informed of both surgical options but chose mastectomy, 74 percent in Minnesota and 62 percent in Massachusetts said they did so on their surgeons' advice.

Despite these disparities, some experts are loath to identify geography as an important influence on trends in breast cancer treatment. But where women live and how that affects their health and quality of life after breast cancer is something we ignore at our peril. At the least, the regional divide between lumpectomy and mastectomy may be a valid measure of which states hew closely to the most current treatment guidelines—and which do not.

Palmer, for her part, says she is happy with her care and the choices and information she was given. But she still chokes up when she talks about losing her breast. "All along, I told myself it wasn't as if they were cutting off my arm," she says. "I thought it wouldn't affect me, but it did." And while she doesn't regret having had a mastectomy, life hasn't always been easy since then. "It was at least a year before I could look at myself naked in the mirror."

How geography affects a woman's health and quality of life is something we ignore at our own peril.

As for Francie Coulter, if she could have done one thing differently, "I would have leaned on my friends and family more. I didn't want people worrying about me, so I always made sure I had my wig on and my makeup done whenever I left the house. That could be a real effort somtimes." Still, she doesn't regret the treatment choices she made. "No one wants to get breast cancer, but for the most part, I had a good experience," she says. "For me, lumpectomy was absolutely the right choice."

Karen Houppert is working on a book about military families to be published by Random House in 2004. Additional reporting by Holly C. Corbett.