Conflicting Breast Cancer Studies Creating Unsettling Uncertainties December 17, 2001 By TAMAR LEWIN Roberta LaCroix was watching the 6 o'clock news at her home in Potsdam, N.Y., last week, when she heard the report about a new drug for women with breast cancer. Ms. LaCroix, 51, who had surgery for breast cancer last month, was interested: she was supposed to start taking tamoxifen, another anticancer drug, but had not filled the prescription. The television news report led her to believe that the new drug might be more effective, with fewer side effects. And the next morning, her sister, Phyllis, called to say she had seen something about a new drug on the 11 o'clock news. "The only problem was, neither of us could remember the name of the drug," Ms. LaCroix said. "So I asked the American Cancer Society, and they told me, but they also told me that the studies hadn't been finalized and this wasn't something to jump on yet." Several recent studies of breast cancer have sent thousands of women on a quest for more information and created unsettling uncertainties about how best to care for their health. The study that caught Ms. LaCroix's attention, released last Monday at the San Antonio Breast Cancer Symposium, was of a new class of drugs, aromatase inhibitors, that seem to work better than tamoxifen, the standard treatment, in preventing recurrences of breast cancer. Another study, reported in the Dec. 13 issue of the New England Journal of Medicine, found that, contrary to popular belief and the finding of a 1989 study, support groups did not extend the lives of women with advanced breast cancer, though they did improve their quality of life. But a third study has caused the widest confusion: American women 40 and older have long been told that regular mammograms will reduce their risk of dying of breast cancer by 30 percent and help avoid the extreme treatment required for large tumors. But a new analysis of several large studies found little evidence that early detection made a difference. Still, most experts recommend that women continue routine mammograms, for while the new study is provocative, it is far from definitive. Given the common knowledge that one American woman in eight develops breast cancer, surveys consistently find that it is the health threat women fear most, although heart disease, the leading cause of death, kills more women each year than all cancers and about 10 times as many as breast cancer. So the conflicting opinions about mammograms have raised anxieties. "It's kind of par for the course for women's health, to say, oops, we messed up again, the research isn't right," Kalisa Jenne-Fraser, 37, of Seattle, said. "Health is a big priority for me, so to think that now we don't have any diagnostic tool that works is scary. I'm actually having a checkup today, because I found a lump, and it probably isn't anything, but what if they say I should have a mammogram? It's so frustrating when the best tool available turns out to be of little use. We're back to square one." Some experts worry that such frustration may lead women to forgo routine screening. "The mammography thing is a mess," said Diane Blum, executive director of Cancer Care in New York. "I have my mammogram scheduled in January, and I'm definitely having it. But this kind of data can be overwhelming to people who've gotten the message for years that mammograms will protect them. When you change that, it makes people distrust all medical advice, and I worry that it leads back to the kind of passivity there was 25 years ago about cancer." Those who have had breast cancer say they are accustomed to the information overload, the ups and downs that come with each new trickle of scientific research. "I get bombarded with so much information about cancer, that sometimes I don't listen," said Laraine Pohle, 59, of Brooklyn, who has had two bouts of breast cancer in the last decade. "Knowledge is good, but too much knowledge may not be. After my second diagnosis, I did all this research. I was on the computer every day, looking at all the drugs. But there are times when my brain cannot register everything. It's confusing, all these changes. You don't know what's really true. You tell me A, then you tell me B. What I am supposed to do? It's like when they tell you butter is bad for you; no, it's not; alcohol is bad for you; no, it's not." Ms. Pohle says she still believes in the value of mammography. "Even if it doesn't improve your chances, at least you know," she said. "You're aware of what's going on. If something happened and you hadn't had a mammogram, the first thing you'd think is I should have had one." Dozens of women interviewed said that whatever the research might show they would insist on having mammograms. "I view them as one step in getting an early diagnosis, and psychologically, I can't understand how it wouldn't help to have the diagnosis earlier," said Jean Leonatti, 48, of Columbia, Mo., who has had two benign breast tumors. "And what's the alternative? If you don't have anything else to offer me, I'm going to stick with this." Dr. Jimmie C. Holland, chairwoman of the psychiatry and behavioral science department at Memorial Sloan-Kettering Cancer Center in Manhattan, said the speed with which scientific news went out to the public created problems. "People who are frightened hold on to these things as if they were the final truth, and science moves so fast, you can't hang your hat on each new study," Dr. Holland said. "It would be better, in a way, if we could wait until we had several studies, and a real conclusion, before presenting it to the public, but that's not how it works. Even if the study is flawed, like the one that found that women in support groups survived longer, people may want to believe it because it's such an appealing idea." Many women said that they would rejoice if participation in support groups extended survival but that that was not why they joined. "I go to my doctor to keep me alive," said a woman in Washington. "I go to my group to keep me going. And I need both of them. It's true, in the back of my mind, I had that study about women in groups living an extra 18 months, but that's not the reason I come." Women say support groups help them handle the uncertainties that accompany a cancer diagnosis. "The best thing anybody ever told me about cancer was the social worker who said the hardest lesson I would have to learn is to deal with uncertainty," said Gladys Halper, who finished treatment for breast cancer five years ago and now helps lead a breast cancer group at Share, an organization in New York that offers self-help groups for women with ovarian or breast cancer. "There are so many decisions to make. At first, I spent all my time at Barnes & Noble, reading about breast cancer. The reason I joined a support group was to be with others going through the same things." For health practitioners, the new research brings special challenges. "Going by the standards of care, which is what we do, we ask women if they're doing breast self-examination, and we instruct them if they're not, and we ask when they had their last mammogram and advise them when to go," said Valerie Layne, a family nurse-practitioner in New Jersey. "But I do feel funny. I know there's real debate about how much good those things do. What we recommend should be based on scientific evidence, and here we have the battle of the dueling experts. The three physicians here say we can't not recommend these things. If a woman had a mass in her breast, and we hadn't recommended mammograms, we wouldn't stand a chance in court." Besides, it is complicated to tell a patient to disregard previous advice. "Once you've told women this is the right thing to do in terms of health screening, that's a hard thing to change," Ms. Layne said. "That's true for me, too. I'm 47, and I've been having mammograms annually since I was 40. It's hard to let go of old beliefs." But ultimately, doctors say, medicine is always changing, and new information always changes treatment options - and raises new questions. Dr. Clifford A. Hudis, chief of the breast cancer medicine service at Memorial Sloan-Kettering, said that almost every patient he saw late last week asked about the aromatase inhibitor study, as did other patients in a flood of e-mail messages and phone calls. "I told women who wondered about switching that while this looks promising, we know tamoxifen works," Dr. Hudis said, "while on the new drugs, we haven't had independent confirmation and we don't know yet know how they work in women who've been taking tamoxifen. But if a patient is determined to have an aromatase inhibitor, at this point, that's not an unreasonable position. It's the nature of medicine that things change, new options appear, and that's a good thing." Copyright 2001 The New York Times Company Annals of Internal Medicine, 12/01 NYTimes article 2/5/02 New York Times 2/3/02 Dr. Larry Norton and 19 cancer organizations Ralph Moss Comments on the Controversy New York Times article, 2/11/02 Chicago Tribune 2/6/02 Barron H.Lerner, 3/3/02 Washington Post Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.