Health Talk:
Mammography
Hosted by Abigail Trafford
Washington Post columnist
Tuesday, March 5, 2002; 2 p.m. EST
The mammography controversy rages on. Secretary of Health and Human
Services, Tommy Thompson, is urging all women 40 and older to be screened with a mammogram every year or so--endorsing the recommendations of the American Cancer Society and the National Cancer Institute. But the National Breast Cancer Coalition, a grassroots advocacy group, is changing its policy and no longer advises healthy women over 50 to get an annual mammogram.
"There is insufficient evidence to recommend for or against
screening mammography in any age group of women," states the coalition on its Web site.
The controversy revolves around three different interpretations of existing studies. Two evaluations -- one by Danish researchers and another by an independent panel that advises the National Cancer Institute -- did not find enough compelling evidence to justify mammography screening. A third
review by the U.S. Preventive Services Task Force, an advisory group to the
health and human services department, did find some benefit from
mammography in reducing breast cancer deaths and endorsed current
guidelines for screening.
Meanwhile, women are left to decide what they will do about mammography screening. How do you make
decisions in the face of uncertainty? How do you evaluate your personal risks?
To talk about this controversy is Fran Visco, president of the National Breast Cancer Coalition.
The transcript follows.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
Abigail Trafford:
Hello everybody! Have you gotten a mammogram this year? Do you plan to? Are you confused with the recent debate over the mammography. Join us now. Send us your questions and comments.
Abigail Trafford:
Hello, Fran, and welcome to Health Talk. The mammography debate is very confusing. You have changed your recommendations on screening. Tell us what your new recommendations are -- and why?
Fran Visco: We have changed our recommendations for women over 50. There are documented risks of mammography screening and now serious questions about the benefits. We are asking women to become aware of these issues and make individual decisions about screening.
Abigail Trafford:
Let's get one thing straight about mammography. If a woman finds a lump or has other symptoms, she should have a diagnostic mammogram to check it out, right?
Fran Visco: The debate is about screening mammography, that is mammography for symptom free women. If a woman finds a lump, or has other symptoms, she should have a diagnositic mammogram. That is extremely important and is not affected by this debate.
Abigail Trafford:
Many women have gotten in touch with me and said that a routine mammogram detected their breast cancer at a very early stage. They believe that mammogram screening saved their life. Is this not so?
Fran Visco: My breast cancer was found at age 39 by a mammogram. I did believe it saved my life. The reality though is that if it had been found five years later, while I was in the shower, I may have had the same outcome. While a mammogram can find some breast cancers, the issue is whether it makes a difference in mortality. Remember, a mammogram finds breast cancer after it has been there for seven to ten years. We don't know how to find breast cancer truly early. If you go to the National Breast Cancer Coalition website and review our question and answer sheet on this issue, you will get a better sense of the complexity of the issue, and a better understanding of why this kind of anecdotal information is not evidence that mammography screening saves lives.
D.C.:
Dear Ms. Visco,
What is the WEBSITE address for the
National Breast Cancer Coalition?
Also, other than individual contributions,
what drug, pharmaceutical and medical-related
corporations fund your organization?
How may the public review your funding
sources?
Thanks so much.
Fran Visco: The website address is stopbreastcancer.org. You can call NBCC at 1 800 NBCC 838 and request copies of our annual reports. You can also ask for our IRS Form 990 from the federal government. We are very proud of the fact that our income from drug companies is a very, very small percentage of our overall income. Most of our income comes from individuals, foundations and non-medical related companies. We also do not take money from drug companies for most of our programs and none at all for our public policy and advocacy work.
Abigail Trafford:
Tell us what the new reports on mammography conclude. They are reviews of existing studies. Two analyses--one by Danish researchers, the other by an independent panel that advices the national Cancer Instsitute, questioned the value of routine mammogram screening. A third report that reviewed the same studies came to a different conclusion. This group, which advises the department of Health and Human Services, concluded that screening has some benefit and affirmed the recommendation that every woman aged 40 and older get a mammogram. How can the same data lead to such different conclusions? Can you resolve these conflicting opinions?
Fran Visco: There have been many scientific articles written about the seven clinical trials on screening mammography. The Danish researchers and the PDQ committee concluded that there were sufficient flaws in several of the trials to conclude that the results (that mammography screening reduces mortality) may not be valid. Other researchers looked at the same trials and believed the results to be valid, even though all recognize there are flaws. This is a natural state in science. THere is uncertainty about how to interpret data, about whether the flaws are sufficient to allow us to ignore a particular trial. Also, the Danish reseachers went beyond the published literature and looked at correspondence among scientists and other evidence, to reach their conclusions. The HHS committee chose not to do that. The issue is that serious, competent scientists do not agree on how to interpret the data, all agree there are flaws and that there should be an independent audit of the original trial data. This dispute is real. NBCC believes that because of this dispute and the uncertainty about the benefits of mammography, women should eduate themselves, discuss these issues with the physicians and make their own decisions about how to proceed.
Alexandria, Va.:
Doesn't the idea of not getting mammograms because they -might- not be the perfect solution smack of righteous defeatism? The idea that if it's not perfect, it's not worth doing? It seems pretty obvious that mammography, along with self-examination and a thorough understanding of your family medical history, is a key element in cancer screening, even if it's not 100% accurate. I'd take anything over nothing. Abigail Trafford:
It's tempting. Doing something is better than doing nothing. So what, if mammography is not perfect. But there are downsides--the psychological and financial costs of followup evaluations, the potential for over-diagnosis and over-treatment. Fran, tell us more about the risks of mammography. How can individual women balance the risks against the benefits and make her own decision?
Fran Visco: I certainly understand the feeling that something is better than nothing. The issue is not that mammograms are not perfect, no one believes they are. There have always been false positives, false negatives, mammograms do not find all breast cancer. What is obvious to the public may not be scientifically correct. Breast cancer is a complex disease. Perhaps mammograms can find the type of breast cancer that never becomes life threatening. Perhaps it does not find breast cancer early enough to make a real difference in mortality. Remember, in a clinical trial there are two arms: one group of women got mammograms, the other went about their business. The trials may conclude that there is no difference in mortality between the two arms. That does not mean women are left with nothing: what the women did in the trial arm without mammography had the same end result.
As for breast self exams, there is absolutely no evidence that breast self exams save lives. I suggest you go into the NBCC website (stopbreastcancer.org) and read our paper on breast self exam with includes an analysis of the scientific evidence.
Finally, the risks of mammography are real. If you understand the risks, know that the benefits are uncertain, and choose to have a mammogram, that is your choice. It is precisely that choice that NBCC believes women are capable or and entitled to make.
Breast Health:
I am a 29-year-old, slightly overweight but otherwise healthy female. A maternal aunt died of breast cancer around the age of 40. My mother and sisters and all other female relatives (maternal and paternal) are, so far, still in excellent health (breast health and otherwise). (My maternal grandmother died long ago of brain cancer, I believe. I know very little of my paternal grandparents, who died when my father was a boy.)
My mother occasionally urges me to get a mammogram now, while still young and healthy, so that my doctors have a "baseline" for later-in-life comparison.
Do you recommend this? I do not believe my insurance will cover this, but I am willing to pay if this will potentially ensure my future health!
Also, at my age/condition, how often should I be getting a pap smear/breast exam (in addition to my regular monthly breast self-exams)? I've seen recommendations of everything from every 3-years to every year.
Also, I'm told by my doctor that I have fibrous breasts. What does this mean?
Fran Visco: I wish I could help you, but I am not a physician. I am a breast cancer activist. I can tell you that one important thing to do is to become politically active so that we have the federal resources needed to find the answers for you and for all women. There is no evidence that mammography is effective for someone in your age group. Also, remember that most breast cancers are found by women themselves. Not by regimented breast self exam, but usually in the shower or the like. It is good to be aware of your risk, As I understand the evidence, it does not appear, at least from the information you are giving me, that you are at significant increased risk. If you are concered about this, I suggest you seek out a genetic counseler at your hospital or cancer center.
Dallas, Texas:
Ms. Visco, in your article, you mention that you are a breast cancer survivor. I'm curious as to whether your breast cancer was detected through a mammogram?
Fran Visco: Yes, my breast cancer was found by a mammogram in 1987. I now understand the evidence and recognize that while it was found in 1987, that may have just given me several more years of knowing I had breast cancer, without changing the outcome. Finding breast cancer isn't the issue; saving lives is. I suggest you go into NBCC's website, stopbreastcancer.org, to review our Q&A on this issue.
St. Louis, Mo.:
I have been told that many of the studies of mammography that showed no benefit were old studies. Can you comment on that, please?
Fran Visco: The seven trials date back to the early sixtiesand up to the mid eighties. However, that fact does not necessarily make the results inaccurate.
Rockville, Md:
I recently had my annual mammogram. I am almost 45. I'm not really sure what the controversy is all about. If you go every year and self examine, perhaps the test will catch a problem that much sooner. Did the study do any sort of analysis concerning those individuals whose health insurance would not pay for a mammogram but once every other year? What income levels were used in the study? I would think that the lower the income level and the unavailablility of good health insurance to cover the test, the higher the probability that the cancer may be beyond help. For the 10 minutes or so the test takes, it's certainly worth it. Abigail Trafford:
You hit on a huge problem--the lack of adequate or any health insurance to cover not just mammograms but treatment of breast cancer. That's why income levels are linked to mortality rates. Fran, how does insurance influence the use of mammography and access to treatment?
Fran Visco: THere is not question that women who do not have access to insurance coverage have a worse health outcome. This is true about treatment. In fact, one issue that the NBCC constantly raises is the fact that if we had taken some of the billions of dollars a year focused on mammography screening, and purchased health care for underserved women, we would have saved many more lives than the most ardent proponent of mammography would claim. In fact, last year the NBCC succeeded in getting Congress to enact the breast and cervical cancer treatment act. This legislation, which we fought for for four long years, provides treatment coverage for underserved women whose breast cancer is found by federally funded screening programs. For too long Congress and the American public were in support of getting mammograms and pap smears to poor women, but then left them to their own devices to get treatment once their cancer was diagnosed. This was just another example of the inordinate role mammography screening plays in this culture. As activists, we found that unacceptable, and designed legislation and through our grassroots advocacy network, pushed to get it enacted into law.
What this country needs is uniform access to quality health care. If the goal is to save lives, that should be our focus.
Coronado, Calif.:
Thank you for being willing to tackle this scary topic at such a confusing time.
I fear for our young women with all of this conflicting data and opinion. Here we are with improved technology and the best ability we have ever had to prevent death from breast cancer and now, we aren't going to use it properly?
If money and insurance companies were not in control of our lives, what would we be doing in the areas of prevention, diagnosis and treatment? Abigail Trafford:
Very good points. And I wonder if there isn't a better screening device to detect early breast cancer than mammography.
Fran Visco: As activists we fight every day to get more research dollars to scientists and to get scientists to look beyond the status quo to find better ways to detect bresat cancer, ways to prevent it from occurring to begin with, and and new, non toxic ways to treat the disease. We all must get behind this effort: Congress, the public, sicentists and insurance companies. As breast cancer activists, we are committed to making this happen.
Bethesda, Md.:
Ms. Visco, Congratulations to you and the National Breast Cancer Coalition for having the courage to say to women that we just don't know yet what the answers are on mammography. Surely women will now be turning to their physicians for advice on making informed decisions. What is the NBCC doing to ensure that physicians have the most useful, up-to-date information to discuss with concerned patients on the risks and benefits of mammography?
Fran Visco: Well, educating physicians is more difficult than educating the public. But we at the National Breast Cancer Coalition have never walked away from a difficult issue. We do make available to physicians and researchers our analysis of the science and our advice on how best to advise women. We believe very strongly that educating women, which we are committed to doing, is the best way to educate physicians. When an informed patient or healthy woman questioning screening, has a discuss with her physician, she is participating in the process of educating the medical establishment.
St Louis, Mo.:
Can you please tell me about the report that HHS talked about last week froma prevention taskforce? Isn't that information ok to believe? Abigail Trafford:
That was the report by the U.S. Preventive Services Task Force, an advisory group to the Department of Health and Human Services. Interestingly this same group found that the data was not convincing to recommend screening mammography for women under 50. Their findings were over ruled. Now the task force is recommending mammograms for women 40 and above. What accounts for the change? How reliable is their information?
Fran Visco: I have read all of the trials, most of the articles reviewing the trials, and the Danish, PDQ and Task Force reports. There is a real difference of opinion among the scientists and doctors who issued these reports. I personally believe that the Task Force recommendations were based not just on a different view of the data, but also on the cultural and political pressures to support mammography. Mammography has been the breast cancer issue for many years now. IN fact, way too much emphasis has been placed on that issue. But it is ingrained in AMerican culture: once a year for a lifetime, early detection saves lives, and the like. Congress, HHS, the public all want a clear simple message. THey want to hear that mammograms save lives, we have invested too much in that screening tool and in education programs about mammography, to want to hear otherwise. I believe the Task Force was influenced by this pressure.
What you should do is understand the different positions and make your own decision.
Dallas, Texas:
I've looked at your q&a on the coalition's website. The risks of mammography still seem very minor to me. This makes me wonder if a large part of the controversy has to do with reimbursement issues -- like, maybe, there's a political agenda lurking behind the science?
Fran Visco: There are many women who believe the risks are not minor. That is a choice each women should make for herself. I don't know what the reimbursement issue could be that would fuel this particular debate.I look at the political issue as one that skews in favor of mammography: the cultural and political pressures to continue to support a strongly held belief that mammograms save lives and the pressure to support a multibillion dollar infrastructure around this screening device. I wish the political pressures were more on the side of getting quality health care to all women so that instead of saving mammograms, we wold save lives.
St. Louis, Mo.:
How do we know which lumps will go on to kill a person and which would not? Ms. Visco, do you know that your lump was one that would not have been a problem if you had left it in for 5 years? How can we figure that out?
Fran Visco: A very good question. In fact we do not know that about most breast cancer. Much science is going on right now to look at the molecular basis of breast cancer, to determine which are the breast cancers we should worry about and which will pose no problem for women. There are a number of scientists who believe that mammography is good at finding the indolent breast cancer, and not so good at finding the aggressive type.While it may be tempting to believe that since we don't know we should find all types and treat them, the risks associated with that approach are significant. Again, women need to understand this and make their own decisions.
A young woman told me yesterday she would not mind having a mammogram find DCIS and having her breasts removed. THere are many women who would not agree.
Fairfax, Va.:
I am a 34-year-old woman in excellent general health. My mother has a history of calcium deposits in her breasts that the doctors always think are tumors initially, so she has undergone several needle biopsies and is preparing to undergo another procedure shortly where the calcium deposit will be removed. Her doctor is recommending that I get a baseline mammogram done now based on my mother's history, and the fact that calcium deposits are sometimes considered precursors to breast cancer. How important is it that I do this now? My Mom is in early early 60s (don't know if that makes any difference - most of the women I know who have had breast cancer were diagnosed in their 40s or 50s).
Fran Visco: I am not a physician. I suggest you look at the National Breast Cancer Coalition's Q&A on our website and then have a frank discussion with your physician. Personally, I have many questions about the risks associated with mammograms in younger women. And remember, there is no evidence that mammograms reduce mortality in women in our age group. THis is a difficult issue, and I know you have a very difficult and complex decision to make. I am afraid there are no clear, simple answers for you. I do recommend that you become as informed as possible before you make your decision.
Chicago, Illlinois:
Approximately 70% of breast cancer patient do not have any of the classical risk factors in their background. How do you justify women being told to base their decision about mammography screening on their personal risk?
Physicians are consulted by women about 20% of the time regarding mammography screening. Why would they change that now?
Many women are, according to your web site, subjected to unnecessary biopsies because of screening mammography. The false positives cause mental anguish. If women stop getting mammograms and are diagnosed in Stage III and IV - what will the cost be to them in terms of mental anguish and possibly higher mortality because of the late start in treatment?
Fran Visco: The debate is precisely around whether mammgrams find breast cancer at a stage that treatment saves lives. The answer to the question is, we are not certain. What we do state is that there is a serious debate around screening mammography, there are known risks and uncertainties around the benefits. Women must understand this, arm themselves with knowledge and make their own decisions. I justfiy that because I have a great deal of faith and trust in women, in their ability to deal with medical uncertainty and their desire to know the truth.
Your assumption that with mammography fewer women are diagnosed with stage III and IV breast cancer and therefore few women die, is the very believe that is at the core of the debate.
Takoma Park, Md.:
What do you know about ductal lavage as a substitute for or supplement to mammograms? If ductal lavage is useful for detecting breast cancer or potential breast cancer, where can women go to have the procedure? Abigail Trafford:
An are there other substitutes or supplements to mammograms? If a woman does not want to undergo mammography screening, what can she do to monitor her breasts and protect herself against dying from breast cancer?
Fran Visco: There have been no screening trials of ductal lavage. THere is much research going on looking at news ways to detect breast cancer, at earlier stages. There are no answers yet.
Dallas, Texas:
Wasn't the PDQ group as well as the Danish group hashing over some really old data -- figures that aren't even relevant today?
Fran Visco: No, the figures are relevant. Remember, they are the same figures that we base guidlines on to get mammograms. So the data is the same: if they are too old to depend on, they they are too old to depend on for those who issue strong guidelines to be screened also.
Abigail Trafford:
Mortality rates for breast cancer are coming down. Why is this? How has treatment improved in the last decade?
Fran Visco: Many believe that new treatments are the reason for the reduction in mortality rates. THe National Cancer Institute is now conducting a study, the results of which should be availble in the next 12 to 18 months, to determine the reason behind the mortality reduction.
Arlington:
I have gotten mammograms regularly since the age of 40 due to two supposed "risk" factors: fibrocystic disease and not having had children. What is the real evidence on these as risks?
Fran Visco: The National Cancer Institute website can answer your question.
Charlotte, N.C.:
Ms. Visco, once your cancer was detected by mammography in 1987, what was the first thing you thought and what was your medical 'first step' so to speak?
Fran Visco: THe first thing I thought was that I would not live to see my son turn two. My first step was to consult with a medical oncologist and read everything I could find.
San Francisco, Ca:
I agree that many women are fully capable of making decisions on their own. These women may decide not to have a mammogram despite the recommendation of their caregive. I'm a survivor. There were times during my treatment that I wanted my doctor to tell me what he thought was best for me, and I'm an independent and educated young woman. Don't you believe that some women want and/or feel that they need to depend on their physician? Afterall, that's why we're paying them--to be the experts.
Fran Visco: Yes, I agree many women want to hear their doctor's advice. BUt that does not mean that these women do not walk into that discussion fully informed about risks and benefits so they can put that advice into context. I believe women are experts in this decision making also, not just the doctors.
San Francisco, Calif.:
I saw the hearing on C-Span. I was wondering about a comment you made concerning quality of life. It was clear that you don't think the quality of life argument in favor of mammography holds up because of the many women who have had mastectomy over lumpectomy. Don't you think that's really a treatment and choice issue and that mammography shouldn't be blamed for that?
Fran Visco: The issue is that many believe that mammograms find breast cancer early enough that fewer women have mastectomies. The data from the scientific studies show that more mastectominies are performed in the mammography group because more DCIS is found in that group and we don't know how best to treat DCIS so many women lose their breasts.
Richmond, VA:
Do all members of the NBCC have the same opinion as Ms. Visco and have all of the organizations that are a part of NBCC agreed to the change in recommendations about mammography?
Thanks.
Fran Visco: Our policies are recommendations are set by our board of directors, which consists of twenty-five organizations frm around the country, and based on input from our field leaders, which consists of another more than 70 organizations around the country. The policies are set after much research, analysis and debate.
Richmond, VA:
I just read the last question and answer. If women are supposed to make their own decisions and discuss them with their doctor, what will happen to those women who don't have a doctor (other than the emergency room) or who don't understand the issue well enough to ask the doctor?
Fran Visco: A great question. WOmen who do not have access to insurance or to medical providers should contact NBCC or a patient focused organization in their community for help.
Fairfax, VA:
What exactly are the risks regarding mammograms. Ms. Visco has mentioned several times so far in this chat that there are risks women must evaluate but does not metion any specific risks. What are some specific examples of the risks she is referencing?
Fran Visco: The risks are explained in the Q&A on the NBCC website (stopbreastcancer.org) but include overtreatment, false positivies, false security from false negatives, and other quality of life issues.
Kansas City, MO:
It might be appropriate to advise "Fairfax, VA" (and the rest of your visitors) that the risk of breast cancer continues to increase as women age. Abigail Trafford:
You're right and thanks for pointing this out. But tell us, Fran, doesn't the rate drop off after age 70? And aren't breast cancers that develop later in life usually less virulent than those that affect pre-menopausal women?
Fran Visco: Yes, breast cancer is deifnitely a disease of olderwomen. THe risk increases dramatically in post menapausal women. 3.6% of all breast cancer occurs in women under 40. THere is no evidence at all of the effectiveness of mammography in women over 65, they were never part of the trials.
Abigail Trafford:
What kinds of personal risk factors would lead you to decide that you wanted to undergo mammogram screening every year or so?
Fran Visco: GIven the present uncertainty, I personally would consider screening if I were in a very high risk group, such as someone with a significant family history.
Chicago, IL:
Regarding the diagnosis of DCIS - why blame mammography for a practice that in itself should be questioned? If physicians perform unneeded mastectomies for DCIS - isn't that the practice that should change, not mammography screening?
Fran Visco: We really don't know how best to treat DCIS. We don't know which will become invasive cancer. Many recommend mastectomy, chemotherapy which as you know has very signficant side effects, some long term, associated with it. I agree we need to figure out how best to treat DCIS and we need trials to do that. I would not want to make an uninformed recommendation.
hagerstown, maryland:
would you continue to recommend annual or biannual mammograms to your patients if you were a health care provider who does not agree with tommy thompson? (like myself) Abigail Trafford:
Tommy Thompson--and just about all the leading medical groups, the American Cancer Society, the National Cancer Institute, American College of Radiology--recommend that women over 40 get regularly screened. But if you disagree with Thompson, why would you recommend screening to your patients? Fran, what can health professionals do who are put in this poisition?
Fran Visco: Well, you have asked the most difficult question. My only recommendation is for you to discuss the risks and the uncertainty around the evidence with your patients and help them decide. I know that ultimately many of them will turn to you and ask you to tell them what to do. What do you usually tell your patients when they want to do something and you do not believe the evidence supports their decision?
Washington, DC:
Why would you then not consider screening for all women? To be in a high risk group means what? There is such an insignificant % of women who are genetically inclined to the disease. Who are in high risk groups? And how can we advise them not to get mammograms when the data are not conclusive to the contrary?
Fran Visco: I am not aware of scientific evidence that screening saves lives in high risk women, in women with a genetic predisposition. It is not for me to consider screening for all women. I am not anti mammography, although it seems that any questioning of its effectiveness puts one in that category. What I am for is informing women of the risks, the uncertainty around the benefits and having them decide what to do.
I also feel very strongly that mammography has played much too an important role in the focus around breast cancer. Organizations exist solely to educate about mammography, or to get mammograms to women. THe American public and COngress focus much of their breast cancer work on mammograms.
We must find out how to prevent the disease to begin with. We must get treatment to underserved women. We must understand what quality health care is and make certain everyone has access to it. We must learn how to detect breast cancer truly early and what to do with it once we find it at that stage. We need non toxic therapies for this disease.
Mammography is one issue in breast cancer, and not the most important. It's time to move on.
Abigail Trafford:
Our time is up. Thank you Fran Visco. This was so important to discuss. Thank you all for your questions. See you next week.
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