Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

What Do Women Want to Know?

What Do Women Want to Know? Abstract In the early 1970s, before there was any scientific evidence to prove mammography's benefit to younger women, the American Cancer Society (ACS) and the National Cancer Institute (NCI) began to promote screening for all women over the age of 35. The ACS's message to the public was—and still is—“breast cancer is curable, if detected early enough.” In 1985, mammography equipment companies and other businesses with vested interests in getting women to undergo screening began taking over the “public education” efforts with exaggerated claims, such as “a 91% cure rate.” By the time the NCI withdrew its mammography screening recommendation to women in their forties, it was too late. Most women now overestimate their odds of developing breast cancer in their forties and overestimate what mammography can do for them. The recent NIH Consensus Conference Report on mammography screening could have a major impact by explaining that the overwhelming majority of breast cancers are unaffected by early detection, either because they are aggressive or slow growing. Women must be better informed about the risks of mammography screening, especially the uncertainties surrounding a diagnosis of ductal carcinoma in situ. I would not presume to speak for all women today, but I draw upon the experiences of those who come to my organization, the Center for Medical Consumers. Breast cancer has brought hundreds of women to our medical library, which has been open to the public for over 20 years in order to promote informed decision making. I can also speak of what I learn from the growing number of breast cancer advocacy organizations (1). And lastly, I speak for myself. As a medical writer, I have followed the literature on breast cancer. As a consumer advocate, I have followed the selling of mammography screening to women, ever since the early 1970s, when the Breast Cancer Detection and Demonstration Project (BCDDP) introduced the concept of mammography screening at 27 medical centers in the United States. About 280,000 women over age 35 took part in the BCDDP, which was sponsored by the American Cancer Society (ACS) and the National Cancer Institute (NCI). My organization, the Center for Medical Consumers, is founded on the belief that people should be encouraged to base their medical treatment decisions on the published evidence. We also believe that screening decisions should be held to the highest standard of evidence because they affect healthy people. When the NCI announced its 1993 decision to withdraw mammography screening recommendation for women in their forties, I believe that it made the correct judgment. But this didn't seem to change many opinions. Women had already been sold the idea that early detection of breast cancer at any age virtually guarantees cure. The two most common reactions I heard from women at that time were: “I'll still have mammograms just to play it safe”; and “What can we do to protect ourselves, if they take away mammography?” To many, it seemed inconceivable that finding a tumor early could be anything but beneficial. At the very least, many women reasoned, finding a breast cancer early would mean a less drastic treatment—a widespread misperception given the fact that breast-sparing treatment is appropriate for node-positive disease and tumors up to 4 cm (2). In a scenario I have observed many times, be it a public forum on breast cancer or a radio show, the speaker who points to the lack of scientific evidence to support mammography screening for younger women invariably triggers a response like this from a member of the audience: “How dare you say that mammography has no benefit to women in their forties; my breast cancer was discovered on a mammogram last year when I was 43. Now my life has been saved.” These reactions must be viewed against the backdrop of the “public education” surrounding the BCDDP and the more recent breast cancer awareness activities. The overly optimistic opinions surrounding mammography screening's value to women in their forties are the direct result of promoting a technology to the public before there was clear scientific evidence proving its benefit to younger women (3,4). Soon after we opened our Center in 1977, I became aware of a book for women called Early Detection: Breast Cancer is Curable (5) by Dr. Philip Strax, the radiologist who co-authored the Health Insurance Plan (HIP) of Greater New York study (6). Before that study was over, Dr. Strax, then a spokesman for the ACS, established a prototype screening center in New York City called the Guttman Institute, which, in 1968, began offering mammography screening and breast exams to women over age 35 (7). With the best of intentions, I'm sure, mammography began to be promoted to women because the HIP study showed a short-term mortality reduction, despite the fact that mammography's role in that reduction was unclear (the study did not separate the effect of mammography from the clinical breast exam), and despite the fact that mammography's benefit to younger women was unproved (8,9). Over a decade later, the HIP results were re-examined by an independent committee of experts and found to have serious flaws. For example, half the cancers said to have been discovered by mammography alone were actually palpable and in no way clinically occult (10). A woman's doctor may have the most influence in determining whether she will undergo mammography screening. Most doctors tell women in their forties to be screened because, in most cases, their professional organizations (11) advise them to do so. But the most influential source of information for the lore surrounding mammography screening—for the overly optimistic expectations surrounding mammography—is the ACS. The ACS has a long history of overstating the case for early detection (7), of using five-year survival statistics to imply cure (12), of recommending screening tests before there is scientific evidence to prove safety and efficacy (13), and of not warning the public about the risks of screening. In the case of mammography there is the very real possibility of undergoing either an unnecessary mastectomy or unnecessary radiotherapy. Wider acceptance of mammography screening had led to a dramatic increase in the diagnosis of ductal carcinoma in situ (DCIS) (20). Many, perhaps most, of these microscopic lesions would never have progressed to invasive cancer even if left untreated, yet DCIS continues to be treated with mastectomy or radiotherapy in the majority of cases. In this regard, things haven't progressed much since the BCDDP. In 1977, the public learned about so-called microscopic cancers that caused 64 women to be misdiagnosed as having breast cancer during the BCDDP: 37 had undergone mastectomy (4). Quite a revelation. No one ever warns the public about finding a cancer so early that pathologists aren't sure that it's even cancer. And here we are, 20 years later, and pathologists are still trying to determine the natural history of the different subtypes of DCIS in order to avoid overtreatment (14). Now there's a new generation of women in their forties who were too young at the time of those 1977 headlines to be concerned about mammography-related misdiagnoses. After all, breast cancer in that era was an older woman's disease. Women now in their forties have been “raised” on the public health message that “breast cancer is curable if found early enough.” In other words, cure is simply a matter of finding breast cancer early. In other words, if you're dying of breast cancer, it's your fault because you didn't find it early enough. Yet in 1980, I came across a New England Journal of Medicine review of all published breast cancer trials which found that 25%-35% of all women diagnosed and treated at Stage I developed metastasis anyway and died within 10 years of their mastectomies (15). This is just one of many contradictions I would find between the “public education” message to women and the published evidence. In 1985, we saw the start of breast cancer awareness activities, initiated and largely sponsored by Zeneca, the manufacturer of tamoxifen. Now, it is the corporate ads like those of DuPont and General Electric (G.E.), makers of mammography-related equipment, that feature the same old misleading statistics. G.E.'s recent long-running television ad, for example, claimed “a remarkable 91% cure rate” for mammography. These corporate ads come cloaked in the aura of public service announcements (PSA). And frankly, in terms of half-truths, I don't find them to be any different than the real PSAs sponsored by the ACS or the American College of Radiology (16). The depiction of young women in these ads, the use of “one in eight” and “one in nine” statistics, the magazines and talk shows featuring personal stories of young breast cancer survivors all have contributed to the impression of breast cancer as a young woman's disease. Put this heightened awareness together with the exaggerated “public health” message—early detection equals cure—and you have a lot of women out there who think that a mammogram is the only thing that stands between them and imminent death from breast cancer. Any honest public discussion of mammography screening's risk has been and still is discouraged. For example, when Dr. John C. Bailar, III, M.D., published his 1976 article stating, “. . . routine use of mammography in screening asymptomatic women may eventually take almost as may lives as it saves,” (17) hostile radiologists called one UPI reporter, Patricia McCormick, to say she was causing breast cancer deaths by reporting Bailar's point of view (Personal communication, Patricia McCormick, who covered the BCDDP). Radiologists today take a similar stand against the reporting of mammography's risks because it might stop women from having mammography (18). This rather patronizing argument surfaces on those rare occasions when the topic of “overdiagnosis” makes it into the general media (19). (Notice how the medical word sanitizes the problem: physicians use the word “overdiagnosis” when they mean misdiagnosis, when they mean finding cancer that isn't there.) Mammography proponents invariably frame the debate in this manner: what's the harm of anxiety over an abnormal mammogram or a biopsy compared to death from breast cancer? Well, we don't know whether any deaths are prevented, and many women (including those over age 50) do not fully understand the third possibility associated with mammography screening: misdiagnosis of cancer. The overreading of atypical benign breast disease as carcinoma in situ, or of in situ disease as invasive cancer, has occurred in several major trials where pathologists would be expected to be more expert than those in the real world (20). I have met many a woman who has had a mastectomy for DCIS, who regards herself as a cancer survivor, who worries about recurrence like every other cancer patient, who believes her daughters are at high risk, and who has no idea of the uncertainties that surround her diagnosis or that evidence suggests that only some cases of DCIS will become invasive cancer. In the last few years, however, there has been a change. Most women today with a diagnosis of DCIS come to our Center knowing something about the controversies surrounding it. But the point is they hear it for the first time at diagnosis, not before they consent to screening in the first place. In summary, women have received such one-sided and distorted information about early detection that most probably don't know what they should be asking about mammography screening in their forties. Women continue to hear to this day the same inflated message of Dr. Strax's book two decades ago: “Breast cancer is curable, if detected early enough” (21). At this point, I would like to change the title of my speech to: “What Do Women Need to Know.” A consensus pronouncement isn't enough unless you also educate the public about scientific evidence: about how mortality reduction proves the value of a screening test, not how many cancers it can find, and not the number of women in their forties who get cancer. But there's always a part of me asking: Does anyone really care about scientific evidence? Do we accept clinical trial findings only when they support our well-entrenched ideas? I'm including doctors in my questions. Look how long it took surgeons and radiologists to let go of the Halsted-radical mastectomy, the modified radical mastectomy, and routine radiotherapy after modified or total mastectomy—just to cite a few examples. When the National Breast Screening Study of Canada was published, its design and mammographic techniques were attacked by American radiologists (22). Few women had the time or the skills to make an in-depth assessment of their arguments. The suggestion that Canadian mammography techniques were inferior to ours, however, seemed plausible to many women. But I found the “mammography has improved” argument troubling. Does this mean that medical technologies should never be subjected to controlled trials because the findings will always be obsolete by the time they are published? If mammography techniques have improved so much, why were the greatest mortality reductions shown for the two earliest trials (23)? Nearly 30 years of promoting mammography screening have passed, and its proven success in reducing breast cancer mortality in older women has yet to be reflected in the nation's cancer statistics. Given the massive amount of resources poured into the study and promotion of this screening test, the return has been modest, at best. It is time to give priority to etiology. Little is known about how to prevent breast cancer. And I'm not talking here about giving a drug like tamoxifen to healthy women to see if it can prevent more cancers than it causes. Over the last few years, I've noticed a change in thinking about mammography screening among the breast cancer survivor/activists. Traditionally, cancer survivors become evangelists for screening, but I've detected less enthusiasm of late (24,25). Every breast cancer activist I know is a woman diagnosed in her forties. These women know firsthand about mammography's other problem: its high false-negative rate for younger women. I have contacted several advocacy organizations and heard variations on this theme: “We'll continue to have mammograms, but researchers must find better ways to detect early breast cancers because mammography does not help most women. We need to know more about what causes breast cancer.” Mammography may be the best detection tool we have, as the PSAs constantly remind women, but it's just not good enough. Some activists are highly critical of the excessive focus on genetic research. They want more funding directed to a better understanding of carcinogens in the air, water, and food. Some challenge the NCI's focus on individual susceptibility rather than on social responsibility (26). In closing, I want to address the new evidence from Sweden showing a reduction in breast cancer mortality. For nearly a year, radiologists have been portraying this finding to the public as the proof that now ends the controversy (27,28). As someone who listens to how people receive statistical information, I would urge the panel to give careful consideration to the layman's explanation of this new finding. What, for example, does the reduction in “subsequent” mortality actually mean? (The public never hears that qualifying word.) Is this finding an argument for starting screening at age 40, or for delaying it until age 50? How does a woman weigh the 16% reduction in subsequent morality against her odds of misdiagnosis? Does this new finding mean that everyone who undergoes mammography screening can reduce her personal odds of dying of breast cancer by 16% (which is how most people interpret such a statistic)? Or, is it fairer to put it this way: mammography screening may result in a prolonged life for 16% of women with breast cancers? The majority of women whose cancers are found on a mammogram, however, will be unaffected by early detection, either because they have an aggressive, fast-growing cancer or because the tumor is so slow growing the women would enjoy long-term survival whether it was found early on a mammogram or later, once a symptom appeared (29). Some women will be falsely assured that they are cancer-free. Here is where the Consensus Panel could have the greatest impact—by offering a full and honest explanation of statistics, by educating women and their doctors about what mammography can and cannot do, and by bringing to this topic a large dose of reality. References (1) National Breast Cancer Coalition, Washington (DC); SHARE, New York City; Women's Cancer Resource Center, Minneapolis; Breast Cancer Action, San Francisco; Women's Community Cancer Project, Cambridge (MA); Action for Cancer Prevention Campaign, New York (NY). Google Scholar (2) Fisher B, et al. Reanalysis and results after 12 years of follow-up in a randomized clinical trial comparing total mastectomy with lumpectomy with or without irradiation in the treatment of breast cancer. N Engl J Med  1995; 333: 1456-61. Google Scholar (3) Carbone PP. A lesson from the mammography issue. Ann Intern Med  1978; 88: 5,703-4. Google Scholar (4) Final word on disputed mastectomies. Science   1978; 202: 728. Google Scholar (5) Strax P. Early Detection: Breast Cancer is Curable. New York: Harper & Row, 1974. Google Scholar (6) Shapiro S, Strax P, Venet L. Periodic breast cancer screening in reducing mortality from breast cancer. JAMA  1971; 215: 1777-85. Google Scholar (7) Brody JE, Holleb, AL. You can fight cancer and win. New York: Quadrange/New York Times Book Co. 1974:65-9. Google Scholar (8) Kunz J. Mammography dispute continues to simmer. JAMA  1977; 238: 1999-2006. Google Scholar (9) Greenberg DS. X-ray mammography—background to a decision. N Engl J Med  1976; 295:13: 739-40. Google Scholar (10) Greenberg DS. X-ray mammography: silent treatment for a troublesome report. N Engl J Med  1977; 296:17, 1015-6. Google Scholar (11) Screening for breast cancer. In: Guide to clinical preventive services. DHHS, PHS, DPHP, 1996:80-1. Google Scholar (12) American Cancer Society. Facts on breast cancer, 1978. Breast cancer: questions & answers [pamphlet]. 1994. Google Scholar (13) American Cancer Society report on the cancer-related health checkup. CA Cancer J Clin  1980; 30:4, 194-240. Google Scholar (14) Schnitt SJ, Harris JR, Smith BL. Developing a prognostic index for ductal carcinoma in situ of the breast: are we there yet? Cancer  1996; 77:11, 2189-92. Google Scholar (15) Henderson IC, Canellos GP. Cancer of the breast: the past decade, Parts I and II. N Engl J Med  1980; 302: 78-90. Google Scholar (16) Don't mess with your life. Have a mammogram. Public health message from the American College of Radiology-accredited clinics. The New York Times 1993 October 3. Google Scholar (17) Bailar JC. Mammography: a contrary view. Ann Intern Med  1976; 84: 77-84. Google Scholar (18) Kopans DB. Letter. Detection and treatment of ductal carcinoma in situ. JAMA  1996; 276: 869. Google Scholar (19) Kolata G. Mammograms before 50? A hung jury. The New York Times 1993 November 14. Google Scholar (20) Ketcham AS, Moffat FL. Vexed surgeons, perplexed patients, and breast cancer which may not be cancer. Cancer  1990; 65: 387-93. Google Scholar (21) Anthony M. Office of Women's Health, Food and Drug Administration, speaking at “Update on breast cancer: federal agency overview,” held at the Association of the Bar of New York City, 1996 October 10. Google Scholar (22) Allison M. Mammography trial comes under fire. Science  1992; 256: 1128-30. Google Scholar (23) Wright CJ, Mueller CB. Screening mammography and public health policy: the need for perspective. Lancet  1995; 346: 29-32. Google Scholar (24) Visco FM. National Breast Cancer Coalition letter to its membership. November 1996. Google Scholar (25) Peterson N. Mammography under fire. Breast Cancer Action Newsletter, October/November 1996. Google Scholar (26) Brenner B. Whose cancer institute is it anyway? Breast Cancer Action Newsletter, October/November 1996. Google Scholar (27) American College of Radiology. Press release: Swedish study supports U.S. groups' position calling for mammography screening for women aged 44-49. 1996 March 21. Google Scholar (28) Kopans DB. Don't let politics sway mammogram debate [letter]. The New York Times 1996 December 13. Google Scholar (29) Lee JM. Screening and informed consent. N Engl J Med  1993; 328:6, 438-40. Google Scholar Oxford University Press http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

What Do Women Want to Know?

Napoli, Maryann
JNCI Monographs , Volume 1997 (22) – Jan 1, 1997
Download PDF
3 pages

Loading next page...
 
/lp/oxford-university-press/what-do-women-want-to-know-jCitW6jEV9

References (17)

Publisher
Oxford University Press
Copyright
Oxford University Press
ISSN
1052-6773
eISSN
1745-6614
DOI
10.1093/jncimono/1997.22.11
Publisher site
See Article on Publisher Site

Abstract

Abstract In the early 1970s, before there was any scientific evidence to prove mammography's benefit to younger women, the American Cancer Society (ACS) and the National Cancer Institute (NCI) began to promote screening for all women over the age of 35. The ACS's message to the public was—and still is—“breast cancer is curable, if detected early enough.” In 1985, mammography equipment companies and other businesses with vested interests in getting women to undergo screening began taking over the “public education” efforts with exaggerated claims, such as “a 91% cure rate.” By the time the NCI withdrew its mammography screening recommendation to women in their forties, it was too late. Most women now overestimate their odds of developing breast cancer in their forties and overestimate what mammography can do for them. The recent NIH Consensus Conference Report on mammography screening could have a major impact by explaining that the overwhelming majority of breast cancers are unaffected by early detection, either because they are aggressive or slow growing. Women must be better informed about the risks of mammography screening, especially the uncertainties surrounding a diagnosis of ductal carcinoma in situ. I would not presume to speak for all women today, but I draw upon the experiences of those who come to my organization, the Center for Medical Consumers. Breast cancer has brought hundreds of women to our medical library, which has been open to the public for over 20 years in order to promote informed decision making. I can also speak of what I learn from the growing number of breast cancer advocacy organizations (1). And lastly, I speak for myself. As a medical writer, I have followed the literature on breast cancer. As a consumer advocate, I have followed the selling of mammography screening to women, ever since the early 1970s, when the Breast Cancer Detection and Demonstration Project (BCDDP) introduced the concept of mammography screening at 27 medical centers in the United States. About 280,000 women over age 35 took part in the BCDDP, which was sponsored by the American Cancer Society (ACS) and the National Cancer Institute (NCI). My organization, the Center for Medical Consumers, is founded on the belief that people should be encouraged to base their medical treatment decisions on the published evidence. We also believe that screening decisions should be held to the highest standard of evidence because they affect healthy people. When the NCI announced its 1993 decision to withdraw mammography screening recommendation for women in their forties, I believe that it made the correct judgment. But this didn't seem to change many opinions. Women had already been sold the idea that early detection of breast cancer at any age virtually guarantees cure. The two most common reactions I heard from women at that time were: “I'll still have mammograms just to play it safe”; and “What can we do to protect ourselves, if they take away mammography?” To many, it seemed inconceivable that finding a tumor early could be anything but beneficial. At the very least, many women reasoned, finding a breast cancer early would mean a less drastic treatment—a widespread misperception given the fact that breast-sparing treatment is appropriate for node-positive disease and tumors up to 4 cm (2). In a scenario I have observed many times, be it a public forum on breast cancer or a radio show, the speaker who points to the lack of scientific evidence to support mammography screening for younger women invariably triggers a response like this from a member of the audience: “How dare you say that mammography has no benefit to women in their forties; my breast cancer was discovered on a mammogram last year when I was 43. Now my life has been saved.” These reactions must be viewed against the backdrop of the “public education” surrounding the BCDDP and the more recent breast cancer awareness activities. The overly optimistic opinions surrounding mammography screening's value to women in their forties are the direct result of promoting a technology to the public before there was clear scientific evidence proving its benefit to younger women (3,4). Soon after we opened our Center in 1977, I became aware of a book for women called Early Detection: Breast Cancer is Curable (5) by Dr. Philip Strax, the radiologist who co-authored the Health Insurance Plan (HIP) of Greater New York study (6). Before that study was over, Dr. Strax, then a spokesman for the ACS, established a prototype screening center in New York City called the Guttman Institute, which, in 1968, began offering mammography screening and breast exams to women over age 35 (7). With the best of intentions, I'm sure, mammography began to be promoted to women because the HIP study showed a short-term mortality reduction, despite the fact that mammography's role in that reduction was unclear (the study did not separate the effect of mammography from the clinical breast exam), and despite the fact that mammography's benefit to younger women was unproved (8,9). Over a decade later, the HIP results were re-examined by an independent committee of experts and found to have serious flaws. For example, half the cancers said to have been discovered by mammography alone were actually palpable and in no way clinically occult (10). A woman's doctor may have the most influence in determining whether she will undergo mammography screening. Most doctors tell women in their forties to be screened because, in most cases, their professional organizations (11) advise them to do so. But the most influential source of information for the lore surrounding mammography screening—for the overly optimistic expectations surrounding mammography—is the ACS. The ACS has a long history of overstating the case for early detection (7), of using five-year survival statistics to imply cure (12), of recommending screening tests before there is scientific evidence to prove safety and efficacy (13), and of not warning the public about the risks of screening. In the case of mammography there is the very real possibility of undergoing either an unnecessary mastectomy or unnecessary radiotherapy. Wider acceptance of mammography screening had led to a dramatic increase in the diagnosis of ductal carcinoma in situ (DCIS) (20). Many, perhaps most, of these microscopic lesions would never have progressed to invasive cancer even if left untreated, yet DCIS continues to be treated with mastectomy or radiotherapy in the majority of cases. In this regard, things haven't progressed much since the BCDDP. In 1977, the public learned about so-called microscopic cancers that caused 64 women to be misdiagnosed as having breast cancer during the BCDDP: 37 had undergone mastectomy (4). Quite a revelation. No one ever warns the public about finding a cancer so early that pathologists aren't sure that it's even cancer. And here we are, 20 years later, and pathologists are still trying to determine the natural history of the different subtypes of DCIS in order to avoid overtreatment (14). Now there's a new generation of women in their forties who were too young at the time of those 1977 headlines to be concerned about mammography-related misdiagnoses. After all, breast cancer in that era was an older woman's disease. Women now in their forties have been “raised” on the public health message that “breast cancer is curable if found early enough.” In other words, cure is simply a matter of finding breast cancer early. In other words, if you're dying of breast cancer, it's your fault because you didn't find it early enough. Yet in 1980, I came across a New England Journal of Medicine review of all published breast cancer trials which found that 25%-35% of all women diagnosed and treated at Stage I developed metastasis anyway and died within 10 years of their mastectomies (15). This is just one of many contradictions I would find between the “public education” message to women and the published evidence. In 1985, we saw the start of breast cancer awareness activities, initiated and largely sponsored by Zeneca, the manufacturer of tamoxifen. Now, it is the corporate ads like those of DuPont and General Electric (G.E.), makers of mammography-related equipment, that feature the same old misleading statistics. G.E.'s recent long-running television ad, for example, claimed “a remarkable 91% cure rate” for mammography. These corporate ads come cloaked in the aura of public service announcements (PSA). And frankly, in terms of half-truths, I don't find them to be any different than the real PSAs sponsored by the ACS or the American College of Radiology (16). The depiction of young women in these ads, the use of “one in eight” and “one in nine” statistics, the magazines and talk shows featuring personal stories of young breast cancer survivors all have contributed to the impression of breast cancer as a young woman's disease. Put this heightened awareness together with the exaggerated “public health” message—early detection equals cure—and you have a lot of women out there who think that a mammogram is the only thing that stands between them and imminent death from breast cancer. Any honest public discussion of mammography screening's risk has been and still is discouraged. For example, when Dr. John C. Bailar, III, M.D., published his 1976 article stating, “. . . routine use of mammography in screening asymptomatic women may eventually take almost as may lives as it saves,” (17) hostile radiologists called one UPI reporter, Patricia McCormick, to say she was causing breast cancer deaths by reporting Bailar's point of view (Personal communication, Patricia McCormick, who covered the BCDDP). Radiologists today take a similar stand against the reporting of mammography's risks because it might stop women from having mammography (18). This rather patronizing argument surfaces on those rare occasions when the topic of “overdiagnosis” makes it into the general media (19). (Notice how the medical word sanitizes the problem: physicians use the word “overdiagnosis” when they mean misdiagnosis, when they mean finding cancer that isn't there.) Mammography proponents invariably frame the debate in this manner: what's the harm of anxiety over an abnormal mammogram or a biopsy compared to death from breast cancer? Well, we don't know whether any deaths are prevented, and many women (including those over age 50) do not fully understand the third possibility associated with mammography screening: misdiagnosis of cancer. The overreading of atypical benign breast disease as carcinoma in situ, or of in situ disease as invasive cancer, has occurred in several major trials where pathologists would be expected to be more expert than those in the real world (20). I have met many a woman who has had a mastectomy for DCIS, who regards herself as a cancer survivor, who worries about recurrence like every other cancer patient, who believes her daughters are at high risk, and who has no idea of the uncertainties that surround her diagnosis or that evidence suggests that only some cases of DCIS will become invasive cancer. In the last few years, however, there has been a change. Most women today with a diagnosis of DCIS come to our Center knowing something about the controversies surrounding it. But the point is they hear it for the first time at diagnosis, not before they consent to screening in the first place. In summary, women have received such one-sided and distorted information about early detection that most probably don't know what they should be asking about mammography screening in their forties. Women continue to hear to this day the same inflated message of Dr. Strax's book two decades ago: “Breast cancer is curable, if detected early enough” (21). At this point, I would like to change the title of my speech to: “What Do Women Need to Know.” A consensus pronouncement isn't enough unless you also educate the public about scientific evidence: about how mortality reduction proves the value of a screening test, not how many cancers it can find, and not the number of women in their forties who get cancer. But there's always a part of me asking: Does anyone really care about scientific evidence? Do we accept clinical trial findings only when they support our well-entrenched ideas? I'm including doctors in my questions. Look how long it took surgeons and radiologists to let go of the Halsted-radical mastectomy, the modified radical mastectomy, and routine radiotherapy after modified or total mastectomy—just to cite a few examples. When the National Breast Screening Study of Canada was published, its design and mammographic techniques were attacked by American radiologists (22). Few women had the time or the skills to make an in-depth assessment of their arguments. The suggestion that Canadian mammography techniques were inferior to ours, however, seemed plausible to many women. But I found the “mammography has improved” argument troubling. Does this mean that medical technologies should never be subjected to controlled trials because the findings will always be obsolete by the time they are published? If mammography techniques have improved so much, why were the greatest mortality reductions shown for the two earliest trials (23)? Nearly 30 years of promoting mammography screening have passed, and its proven success in reducing breast cancer mortality in older women has yet to be reflected in the nation's cancer statistics. Given the massive amount of resources poured into the study and promotion of this screening test, the return has been modest, at best. It is time to give priority to etiology. Little is known about how to prevent breast cancer. And I'm not talking here about giving a drug like tamoxifen to healthy women to see if it can prevent more cancers than it causes. Over the last few years, I've noticed a change in thinking about mammography screening among the breast cancer survivor/activists. Traditionally, cancer survivors become evangelists for screening, but I've detected less enthusiasm of late (24,25). Every breast cancer activist I know is a woman diagnosed in her forties. These women know firsthand about mammography's other problem: its high false-negative rate for younger women. I have contacted several advocacy organizations and heard variations on this theme: “We'll continue to have mammograms, but researchers must find better ways to detect early breast cancers because mammography does not help most women. We need to know more about what causes breast cancer.” Mammography may be the best detection tool we have, as the PSAs constantly remind women, but it's just not good enough. Some activists are highly critical of the excessive focus on genetic research. They want more funding directed to a better understanding of carcinogens in the air, water, and food. Some challenge the NCI's focus on individual susceptibility rather than on social responsibility (26). In closing, I want to address the new evidence from Sweden showing a reduction in breast cancer mortality. For nearly a year, radiologists have been portraying this finding to the public as the proof that now ends the controversy (27,28). As someone who listens to how people receive statistical information, I would urge the panel to give careful consideration to the layman's explanation of this new finding. What, for example, does the reduction in “subsequent” mortality actually mean? (The public never hears that qualifying word.) Is this finding an argument for starting screening at age 40, or for delaying it until age 50? How does a woman weigh the 16% reduction in subsequent morality against her odds of misdiagnosis? Does this new finding mean that everyone who undergoes mammography screening can reduce her personal odds of dying of breast cancer by 16% (which is how most people interpret such a statistic)? Or, is it fairer to put it this way: mammography screening may result in a prolonged life for 16% of women with breast cancers? The majority of women whose cancers are found on a mammogram, however, will be unaffected by early detection, either because they have an aggressive, fast-growing cancer or because the tumor is so slow growing the women would enjoy long-term survival whether it was found early on a mammogram or later, once a symptom appeared (29). Some women will be falsely assured that they are cancer-free. Here is where the Consensus Panel could have the greatest impact—by offering a full and honest explanation of statistics, by educating women and their doctors about what mammography can and cannot do, and by bringing to this topic a large dose of reality. References (1) National Breast Cancer Coalition, Washington (DC); SHARE, New York City; Women's Cancer Resource Center, Minneapolis; Breast Cancer Action, San Francisco; Women's Community Cancer Project, Cambridge (MA); Action for Cancer Prevention Campaign, New York (NY). Google Scholar (2) Fisher B, et al. Reanalysis and results after 12 years of follow-up in a randomized clinical trial comparing total mastectomy with lumpectomy with or without irradiation in the treatment of breast cancer. N Engl J Med  1995; 333: 1456-61. Google Scholar (3) Carbone PP. A lesson from the mammography issue. Ann Intern Med  1978; 88: 5,703-4. Google Scholar (4) Final word on disputed mastectomies. Science   1978; 202: 728. Google Scholar (5) Strax P. Early Detection: Breast Cancer is Curable. New York: Harper & Row, 1974. Google Scholar (6) Shapiro S, Strax P, Venet L. Periodic breast cancer screening in reducing mortality from breast cancer. JAMA  1971; 215: 1777-85. Google Scholar (7) Brody JE, Holleb, AL. You can fight cancer and win. New York: Quadrange/New York Times Book Co. 1974:65-9. Google Scholar (8) Kunz J. Mammography dispute continues to simmer. JAMA  1977; 238: 1999-2006. Google Scholar (9) Greenberg DS. X-ray mammography—background to a decision. N Engl J Med  1976; 295:13: 739-40. Google Scholar (10) Greenberg DS. X-ray mammography: silent treatment for a troublesome report. N Engl J Med  1977; 296:17, 1015-6. Google Scholar (11) Screening for breast cancer. In: Guide to clinical preventive services. DHHS, PHS, DPHP, 1996:80-1. Google Scholar (12) American Cancer Society. Facts on breast cancer, 1978. Breast cancer: questions & answers [pamphlet]. 1994. Google Scholar (13) American Cancer Society report on the cancer-related health checkup. CA Cancer J Clin  1980; 30:4, 194-240. Google Scholar (14) Schnitt SJ, Harris JR, Smith BL. Developing a prognostic index for ductal carcinoma in situ of the breast: are we there yet? Cancer  1996; 77:11, 2189-92. Google Scholar (15) Henderson IC, Canellos GP. Cancer of the breast: the past decade, Parts I and II. N Engl J Med  1980; 302: 78-90. Google Scholar (16) Don't mess with your life. Have a mammogram. Public health message from the American College of Radiology-accredited clinics. The New York Times 1993 October 3. Google Scholar (17) Bailar JC. Mammography: a contrary view. Ann Intern Med  1976; 84: 77-84. Google Scholar (18) Kopans DB. Letter. Detection and treatment of ductal carcinoma in situ. JAMA  1996; 276: 869. Google Scholar (19) Kolata G. Mammograms before 50? A hung jury. The New York Times 1993 November 14. Google Scholar (20) Ketcham AS, Moffat FL. Vexed surgeons, perplexed patients, and breast cancer which may not be cancer. Cancer  1990; 65: 387-93. Google Scholar (21) Anthony M. Office of Women's Health, Food and Drug Administration, speaking at “Update on breast cancer: federal agency overview,” held at the Association of the Bar of New York City, 1996 October 10. Google Scholar (22) Allison M. Mammography trial comes under fire. Science  1992; 256: 1128-30. Google Scholar (23) Wright CJ, Mueller CB. Screening mammography and public health policy: the need for perspective. Lancet  1995; 346: 29-32. Google Scholar (24) Visco FM. National Breast Cancer Coalition letter to its membership. November 1996. Google Scholar (25) Peterson N. Mammography under fire. Breast Cancer Action Newsletter, October/November 1996. Google Scholar (26) Brenner B. Whose cancer institute is it anyway? Breast Cancer Action Newsletter, October/November 1996. Google Scholar (27) American College of Radiology. Press release: Swedish study supports U.S. groups' position calling for mammography screening for women aged 44-49. 1996 March 21. Google Scholar (28) Kopans DB. Don't let politics sway mammogram debate [letter]. The New York Times 1996 December 13. Google Scholar (29) Lee JM. Screening and informed consent. N Engl J Med  1993; 328:6, 438-40. Google Scholar Oxford University Press

Journal

JNCI Monographs – Oxford University Press

Published: Jan 1, 1997

There are no references for this article.