Time to Tell the Truth

How Sound Bites and Wishful Thinking
Harm Women's Health Care

Dr. Susan Love's speech to the Ford Hall Form, September 22, 1997, Blackman Auditorium

...The title tonight represents an issue that I think is of growing importance. Not just in women's health, but in health in general. And when I say telling the truth-"Women's Health: Telling the Truth"-it's not that I think we're consciously lying to people. I actually don't. But I think that what happens is, through a collusion of sound bites with the media and wishful thinking from the medical profession, we say things which aren't quite right. And then when we say them enough times, we decide they're the truth, when in fact they weren't quite right from the beginning.

Mammography screening is a great example of this. Mammography screening in women over fifty will reduce the death rate of breast cancer by 30 percent. That's a lot. That means 30 percent of women will live who would have died had they not gotten mammograms. But it is not 100 percent. So there are many women who will get their mammograms and still get breast cancer, maybe not early enough to cure. We also put sentences together, like we say, "Mammography can see 85 percent of cancers." That's true . . . Then we say, "Mammography can find cancer early." That's also true. It doesn't always, but it can. And then we say, "Early cancer is 95 percent curable." That's also true. But if you say those three sentences together quickly, it sounds like mammography can find 85 percent of cancers when they're 95 percent curable, which is not true at all. So that's the way that we start wishfully thinking. And then we start acting like mammography is prevention. Mammography doesn't prevent breast cancer. It finds the cancers that are already there. It's not prevention. It's detection. So wishful thinking and trying to get the message short gets us into a lot of trouble.

The other thing that gets us into trouble is the fact that we neglect to remind people that medical science is a work in progress. It's not the truth. We don't have the truth. Even when we think we have the truth, we're usually wrong. The example that really blew me away in the last couple of years is ulcers. When I was a resident training here at Beth Israel, all the research was on ulcers. Acid causes ulcers, stomach ulcers are caused by acid, we operated for acid, we did all this stuff, and that was one of the things we knew for sure until this recent finding that shows that it's all caused by a bacteria and that antibiotics cure ulcers, and that acid doesn't have anything to do with it. So whenever we think we know what's going on, it doesn't mean we do. I think the public needs to realize that we're only ever talking about our best guess at the moment. I mean, the new question is whether cholesterol really has anything to do with heart disease, and whether it's not all homocystine-that is the new in-thing. And I think you should stay tuned to that, because it's looking like all this focus on cholesterol these years was actually going down maybe the wrong alley. So realize that anything we say in medicine or in health is only our best guess at the moment, and that it's subject to change as new stuff comes in.

Finally, I think the other principle it's really important to recognize is that "the standard of care" only means that all doctors are doing it. It doesn't mean we've proven it works. It just means we're all doing it . . . The best example of that really comes from history here in Boston, with DES, when back in the '50s it was doctors here in Boston who decided that the cause of miscarriages was not enough estrogen during pregnancy. So they started giving women DES, which is a form of estrogen, during their pregnancy, to prevent miscarriages. And they didn't ever do any research, because it made sense to everybody that this was the problem, so they just went ahead and did it. And, in fact, it grew through a large part of the country. And then about four or five years into it, somebody actually did a randomized controlled study, and found that DES had nothing to do with miscarriages, in fact. Didn't help, didn't hurt. Just was irrelevant. Now, that didn't stop people from doing it. We kept giving DES for miscarriages for the next three or four or five years, because God forbid we should let science get in the way of medical practice. And then finally, it started to dribble out and people stopped doing it. Well, then fifteen, seventeen years later, lo and behold, we found out that the daughters of the women who had been given DES had cancer of the vagina, cancer of the uterus, caused by the DES that their mothers had taken. So here was a drug that was given without ever having done any good whatsoever, and it was "the standard of care." Not only did it cause harm down the road, but it never helped, either, which shows you that just because everybody's doing it, doesn't mean it's right.

I think one of the things that we have to do as consumers of health care is demand evidence-based medicine-demand medicine where we actually prove that what we're doing has some value. Now, I'm going to use some examples in women's health that have been in the news lately to show you how some of this stuff gets carried out. Breast cancer has been "in," and the genetic aspects of breast cancer have been a big issue. One of the things we know is what causes cancer. Cancer is caused by screwed-up genes. Now, sometimes you inherit the screwed-up genes from your mother or your father, and sometimes you inherit perfectly normal genes and then somebody comes along or something comes along in the environment and screws up the gene in your breast, which then leads you to get breast cancer. Well, what we've discovered in the last couple of years is a couple of genes that you could inherit from your mother or father, and that's BRCA-1, which stands for Breast Cancer One-you thought it was something really fancy, I know-and BRCA-2, Breast Cancer Two. And there will probably be BRCA-3 and -4 and -5 before we're all done with this. And it's very exciting that we've discovered them. It means that we're going to be able to do a lot more research. But: only five percent of women who get breast cancer actually have inherited one of these genes. Now, these genes are very complicated. BRCA-1 is a big gene, and it has a potential for lots of different mutations, and we don't know which mutation means what . . .

[An] example of oversimplification is the "Jewish gene" . . . There was a guy in Washington, D.C., who had 800 vials of blood in a drawer left over. Why he still had these vials of blood sitting in a drawer, I don't know, but they were left over from Tay-Sachs screening. They were from men, women-he didn't know anything about them. And he tested them for BRCA-1, and, indeed, about five to ten percent were positive, as was true for the general population. So it wasn't any more common than it was in the general population. However, what was interesting was they all had the same mutation. So what that says is not that breast cancer or even hereditary breast cancer is more common in the Jewish population. It says there's a lot of intermarriage in the Jewish population, so that they all ended up with the same mutation. In fact, it's true other places. In Iceland, they all have the same mutation, too, because it's hard to get off of Iceland and intermarry with somebody else. You know, you're sort of stuck. In Norway, it depends on what fjord you live on. One fjord has one mutation, another fjord has another mutation, because you can't get across from fjord to fjord. So, in fact, there isn't a Jewish gene. There is a mutation which is more common in the Jewish population, but breast cancer is not any more common, [nor is] hereditary breast cancer. Now, why are the companies all focusing in on the Jewish population? Because it's much easier to test for one mutation than for twenty-five or thirty. So if they test people from the Ashkenazi Jewish heritage, they only test for one. It's cheaper for them and it's easier, but not because it's more common. And yet what came out in the media was this "Jewish gene," as if this was a disease that was prone and more common to Jews, and it really showed a total lack of understanding.

Now, if most of us don't have a hereditary gene, what are the other causes of breast cancer? And what are the things that are causing the mutations? There's no question that a lot of it has to be hormones. Women get breast cancer. Men get it much, much less frequently. There's about 1,000 cases a year in men, and there's 185,000 cases in women a year. And a lot of it has to do with hormones. The younger you are with your first period, the older you are with menopause, the more years you have hormones, the more risk you have of getting breast cancer. The younger you are with your first pregnancy, the lower your risk-which is not to say that teenage pregnancy is the answer to the breast cancer problem. We'd have other problems. But it does tell you something about the hormonal changes. If you have your ovaries out at an early age, at a young age, you don't get breast cancer almost at all. You get other problems. (There's no free lunch. That's the subtext of this talk.) But everything that has to do [with breast cancer] does seem to have to do with hormones.

There are a lot of exogenous hormones, as well. On the one hand, we have this whole story about the environment and pesticides which are metabolized as forms of estrogen in our body-and maybe one of the things which tends to be increasing breast cancer. My guess is it's not so simple, because back where I am now in California, the Hispanic women who work in the fields and have a very high exposure to pesticides don't have more breast cancer. But it may be that some people inherit a gene which makes you more susceptible to the environmental carcinogens. So you may have a gene which makes you susceptible to pesticides, and then somebody else may not, and that's probably how that's going to work out. And, of course, then you've got all the other hormones we're pumping into our bodies: birth control pills, which don't seem to increase breast cancer, probably because they're a lower dose than the amount of hormones that a normal pre-menopausal woman would have; DES, which of course does; fertility drugs, where we have absolutely no clue what they do, because nobody's really tested them. That's another example where people say, "Oh, well, fertility drugs-we don't have any data that they're dangerous." That's because we don't have any data, not because we know they're safe. Of course, the fertility doctors aren't going to be the ones leading the charge, because they'd just as soon not know if they're dangerous. But we really have no idea. And then, of course, finally, it's the post-menopausal hormones. We do know that they increase breast cancer-and that's going to be my careful segue, you see, into now talking a little bit about menopause.

People have said to me, as a breast surgeon, "What led you into doing this book on menopause?" It's really very simple. I'm forty-nine and flashing. So I wanted to know what the answer was, myself. If I whip off my jacket, you'll know what's going on. But what was really shocking to me as I started to research it was finding out how little we really know about menopause and how many myths there are, and misunderstandings. And they're out there and accepted as if they're the truth. When I started looking up in the gynecology textbooks, I found very little written about menopause, and when they did they called it "ovarian failure." (There we go-failing yet again.) It's because the whole focus of the gynecologist is reproduction. And when we stop being able to reproduce, we've failed. Reproductive failure, ovarian failure. In fact, the other reason they called it that is because the model for menopause, the scientific model, has always been castration. It's been women who have had their ovaries out, or animals where we take the ovaries out. So we assumed that menopause was the same as having your ovaries taken out. And nobody ever really checked to see if that was right.

Now, there have been some more recent studies showing that, in fact, the ovaries continue to produce hormones well into your eighties. They don't fail. They don't stop functioning. They just shift. They don't drop eggs out every month any more, and they shift down and continue to produce estrone and . . . testosterone, well into your eighties. So what they do is exactly what we do at middle age: they change careers. But they don't fail. And so this whole myth that with menopause the ovaries shrivel up, dry up, and become useless-which is sort of the myth of what happens to us, as well-is just not true. We're not supposed to have high levels of hormones our whole lives. We're supposed to have high levels of hormones when we need them to reproduce, and then we shift down to lower levels for the rest of our lives.

Another myth-and I think this is really quite interesting-is that, just as the baby boomers are heading towards menopause, menopause has become a disease. It used to be a normal part of life but now it's a disease and it's called "estrogen deficiency disease." Now, if estrogen deficiency is a disease, then all men have it. When you think about it, it is really crazy to call something a disease that happens to every woman at fifty or fifty-one. I mean, this is totally ridiculous. Even the words we use-you have to listen so hard to the words that are being used. Words like "replacement therapy" imply that we're replacing something that's missing. We're not replacing something that's missing; we're adding something that's not supposed to be there. Now, there may be reasons to do that and there may not. But it's not replacement. By calling it hormone replacement therapy, you're implying that pre-menopausal women are normal and post-menopausal women are diseased. And there's no reason that that should be the case. It occurred to me that so much of this comes from the framing and how you set it up. If you call it "estrogen deficiency disease," "replacement," then it leads you down a path of taking drugs. On the other hand, there's another way to approach it.

Margaret Mead talked about post-menopausal zest. And, in fact, when you think about it, all of the really powerful women in the world are post-menopausal. Margaret Thatcher, Indira Gandhi, Golda Meir, now Madeleine Albright, they're all post-menopausal. Now, the other side of it- . . . I have this nine-year-old [daughter]-is all this data on how girls at eight, nine are full of self-esteem and full of beans and really have the world at their feet, and then they hit puberty and they lose it. It occurred to me: maybe the problem is not estrogen deficiency. Maybe we need estrogen and progesterone to domesticate us enough so that we'll reproduce the race and then we get liberated from it at menopause. I mean, it's somewhat simplistic, but it's interesting how if you change it around, you feel a lot better about it.

Now, Malcolm Pike, who's a researcher at USC [University of Southern California], actually feels that the reason there's so much breast and ovarian cancer is because we have so much hormones during our premenopausal years. So he's actually invented a contraceptive which puts women into reversible menopause. And then when you want to get pregnant, you can turn your fertility back on again. It's about four different drugs combined together to do this, with the idea that it will reduce breast and ovarian cancer. People are shocked and say, "How can you do that? How can you give all these normal women all these hormones?" But is it any different than giving post-menopausal women hormones to make them pre-menopausal? I mean, it's crazy either way. In fact, what do we do to women's bodies? We put them on the pill around puberty, we leave them on until you want to get pregnant. Now you take those fertility drugs that we don't know about and then you go on post-menopausal hormones until you die. I mean, what are we saying about our bodies, other than that we're very supportive of the pharmaceutical companies? When you think about it, it's pretty crazy.

The last myth, and my all-time favorite, is that we're not supposed to live this long . . . So as soon as we're done reproducing, we're supposed to drop dead. Now, men, of course, can reproduce their whole lives. So they are allowed to live this long-I guess with their second wife or something. I haven't quite figured that one out. But it's not true. The trick to that is it's average life expectancy . . . The reason the average life expectancy was fifty at the turn of the century is because there were so many deaths in infancy and the first year of life. So if you add up and divided, you got fifty. It was interesting: there was an announcement a couple of weeks ago how we've increased the life expectancy to the midseventies, and then the next sentence was, "And we decreased infant mortality." They didn't realize that one is the cause of the other. We actually have not lengthened the life span at all. There are more women and men than ever before living their full life span, but we haven't made it any longer. There were always women who lived into menopause. This is not a new phenomenon. I mean, you think back into history, all those old queens, and nobody was saying, "Isn't it a miracle they made it to sixty-five or seventy?" There have always been menopausal women.

In fact, Margaret Locke, who's an anthropologist, has done research trying to figure out why menopause was programmed in. What are the evolutionary advantages to menopause? And she found that the societies that had a cadre of nonfertile women actually did better, because they were the day-care workers and the teachers, and they were much better gatherers than the ones that had a kid hanging off each leg. So we need to have a group of women who are post-menopausal to help take care of the society as a whole, and I would beg to say we're still doing that now.

The other myth about menopause is that it's all low estrogen-that the symptoms of menopause are caused by low estrogen. In fact, it turns out that the symptoms of menopause happen mostly before you have your last period. And they end with the last period. What they really are is hormonal fluctuations-high, low, all over the place-that cause it. In fact, what it is, is puberty in reverse. Remember puberty? Mood swings, tears, acne, sore breasts, cramps, sleeping all the time. Your hormones are all over the place, they balance out, they cruise along, and then you get to forty-five and all of a sudden, mood swings, tears, acne, now you can't sleep at all . . . But, just like puberty, these symptoms are transient. They don't last forever. They last, on average, three to five years, and then they go away as your hormones rebalance. So for women who are suffering-I don't believe in suffering- . . . taking hormones for a brief period of time and then tapering off is fine. There's no risk to that. What worries me more is this notion that we need to take them for the rest of our lives for prevention of diseases that may or may not happen thirty years from now. And the data for this is really not very good.

So this is another example of where we're doing this "standard of care" and yet we haven't proven that the standard of care works. For example, you hear people talking about heart disease: if you take hormones you prevent heart disease. Well, we haven't actually proven that yet. It turns out that the studies that we have all are observational, which means they take women who are on hormones for whatever reason and they compare them to the women who aren't on hormones. And, indeed, the women who are on hormones have less heart disease. But they're at a higher socioeconomic level, better educated, more likely to go to the doctor, eat a good diet, and exercise than the women who aren't on hormones. So what we don't know is, do hormones make you healthy, or do healthy women take hormones? Until we have a study that has the same number of couch potatoes in each group, we're not going to know this. Now, luckily, there is a study like that, the Women's Health Initiative, which will be done in 2008. And there's a center here in Boston, over at the Brigham [and Women's Hospital], for women who are interested in participating. So we will get an answer. But we have not proven that hormones prevent heart disease. My guess is that they may be good for women who already have heart disease, angina, or have had a heart attack. But I'm not sure we need to put every woman on them for 50 years. The median age of a heart attack is 74, and it seems like you've got to be on hormones when you get your heart attack. So it may make more sense, if we're going to do it at all, to start it later, like at 70, so you'll be ready for the heart attack at 74, rather than starting at 50 and having all those additional years on drugs.

Osteoporosis is a very interesting problem. It is true that one out of four women will get a hip fracture, but age 80 is the average age of a hip fracture . . . The median survival age is 78, so half of us aren't going to live long enough to get the hip fracture, first of all, I hate to say. (Life is, in fact, terminal, even though in LA we don't believe that.) What's happened in osteoporosis is fascinating. It's become a disease that's much more prominent because we now have a test, the bone density test. And because we have a test and a way to measure things, we can figure a whole lot more out. And this is another work in progress. The initial data was, "Oh my gracious! Women who go through menopause have lower bone density. They all should be on estrogen." Well, now it's turning out to be a little more complicated than that. There may be some women who have a genetic propensity to osteoporosis and they actually start losing bone before menopause. Then there may be a bigger loss at age 70 than there is at age 50. And that may be why the fractures are in the 80s, rather than earlier on. It also is looking like vitamin D and calcium are much more important than we thought, and that parathyroid hormone is important. I think you're going to see more and more information coming out over the next four to five years, but this is something that is truly a work in progress . . .

Of course, breast cancer is the worry. [Hormone usage] wouldn't be a problem if there weren't a downside, but there is a downside, and women who take hormones more than ten years have an increase in breast cancer of about seventy percent. Now, that does not mean seventy percent of women on hormones get breast cancer. It means a little more than half again as many. So if the risk at age fifty is one in 500 per year, it becomes 1.7 in 500 per year. Not a huge increase, but an increase, for sure. And I think that the real issue in all of this is that we're talking about prevention. When you're talking about treating a disease, you're willing to accept a certain amount of risk. But we're talking about preventing disease which you may or may not get down the road. To have a prevention that causes cancer really makes no sense to me. Even if one out of three women are going to get heart disease, that means two aren't going to get it and are going to be on this drug for fifty years with no benefit. In fact, the latest version of the Nurses' Health Study showed that women who were not overweight, who didn't smoke, who had normal blood pressure and cholesterol had no benefit from taking estrogen. So we really do have an alternative, which is lifestyle changes. To give people a drug for prevention that may cause cancer, when in fact you have an alternative that's safe, makes no sense to me whatsoever.

And it really is consistent[ly shown] that high levels of estrogen cause cancer. In fact, in the no-free-lunch category was a recent study that showed women who have osteoporosis have sixty percent less breast cancer, and that women who have strong bones have four times more breast cancer. So what it really is, is if you have naturally high levels of estrogen in your body, you have good bones, bad breasts, and if you have naturally low levels, you have bad bones, good breasts. But you can't have both. We've been around too long to think we can have it all.

Breast cancer is also a work in progress. We thought we understood breast cancer. We thought there was an estrogen receptor and an estrogen molecule and they got together and told the cells to grow. Well, this year we discovered a second estrogen receptor, independent, totally apart from the first one. And there is some preliminary data [about] the first estrogen receptor, which we'll call alpha, that estrogen stimulates the cells [while] tamoxifen, which is a breast cancer drug, inhibits them (as well as this new drug, raloxifene, that Lilly is coming out with-it's supposed to be the answer to all of life's problems-it also inhibits the cells). Estrogen receptor beta, if you give people estrogen, it inhibits the cells, and tamoxifen and raloxifene stimulate the hell out of them-so [the receptors] are exactly the opposite. And we don't know how many people have which receptor and how they work. So again, a work in progress. Something we thought we had figured out, which really, in fact, is completely up for grabs.

So what is the alternative; what should we do at midlife? Well, I think women really need to look at the risks and benefits in their own lives to make these kinds of decisions. I think this is true in all issues of women's health, and actually in all of health in general. The dilemmas that men are facing right now with the PSA, or the prostate test, are equally daunting, where we have a test that can find very early signs of prostate cancer, but only one-third of those people are really going to go on to get cancer and two-thirds aren't, and we don't know how to tell which are which. So we end up overtreating two-thirds, because we don't know how to tell the difference. So these are not issues only of women's health.

I think it's important for us to really realize that we don't have the answers, and that women are capable-and [all] people-of making decisions. Exercise will decrease osteoporosis, breast cancer, heart disease, and make you feel morally superior. You can't beat that, you know? I think that we need [a proper] diet. We all know the diet-high in fruits and vegetables, low in animal fat, [high in] soy protein, which tends to have plant estrogens in it-that seems to prevent osteoporosis, heart disease, breast cancer, and prostate cancer. In fact, there's no word for "hot flash" in Japan. They don't get them. They have other problems, but they don't get hot flashes, and it's thought to be because of the high soy in their diet. Quitting smoking: as smoking increases, you have an earlier menopause, more heart disease, more breast cancer, and more osteoporosis, and it's the biggest source of wrinkles other than the sun. Smoking does nothing-there is no good thing that happens from smoking. Alcohol is a little trickier. More than three drinks a week increases breast cancer, but one drink a day decreases heart disease. So you get to pick that one.

And then I think you have to have fun. You have to enjoy yourself. You have to give some time for stress reduction and for enjoying life. None of us knows how long we're going to be here, and you had to suffer and then be prematurely knocked out with all this suffering. So I've decided that chocolate is a vegetable. Because it comes from a bean. So I count that in my five fruits and vegetables a day. Because you'd hate to have missed it, you know, in the scheme of things.

So I really think what we should be doing as we hit midlife is to really re-evaluate our lives, to look first to changing our lifestyle. Now, doctors say to me, "Oh, women will never do that. That's why we have to give them a pill. Everybody just wants a pill." Not true. I think if given half a chance and given the encouragement, and given the support systems, we can change our lifestyles. We've already decreased the fat, we already have more people exercising than ever before, and I think we can do that . . . If that doesn't work, then you might consider taking drugs. But you don't need to do that as your first hit, to have all women on drugs for thirty years. Premarin is the biggest-selling drug in America today, and the baby boomers are just starting to hit fifty. So this is big money.

The other side of it is, they say, "Well, women need clear answers." I think that's not true. I think the media needs clear answers. They like to have it very nice and simple so they can solve it. But we don't necessarily need clear answers. Women are perfectly capable of making decisions based on inadequate information. We do it all day every day. This is not a new phenomenon, and we can do it on our health, too. Just tell us that's what we're doing and we'll do it. We'd rather have adequate information, but if we don't-oh well. We can handle it.

So we need to ask for and demand the truth. We don't know the right answer about hormone replacement therapy. Well, that's OK. Some women will choose to do it, some won't, and meanwhile we should work like hell to get the answer. We don't have to pretend we have the answers when we don't. So when I say "telling the truth," that's what I'm talking about. If we had said at the time of silicone implants, "You know what? We don't know what the long-term consequences are going to be," some women would have tried it anyway. Other women wouldn't. But they wouldn't be so angry ten years later, because they would have realized that we didn't know. And it's the same thing with fertility drugs. If we say to women, "We don't know what the effects are," many women will do it anyway because they want to try to have a kid. That's fine. But at least they're going into it with their eyes open, and they realize that there may or may not be consequences.

I think we need to demand the truth in medicine, we need to demand evidence-based medicine, and we as consumers need to look critically at medicine, and not leave our critical eye back at the office or in school. Really, everything is up for questioning. And if we don't question it, and if we don't demand the truth, we won't get it. Thank you very much.

Dr. Susan Love, a surgeon, teacher, researcher, and activist, has founded breast care centers at Faulkner Hospital in Boston and at the University of California, Los Angeles. She is currently an adjunct professor of clinical surgery at UCLA. She has written two best-selling books, on breast cancer and hormone use in women. Northeastern awarded her an honorary doctorate of science in 1991. Her speech was cosponsored by Northeastern's Women's Studies Program.

Related Links:

The Ford Hall Forum
An article on Dr. Love's opinion of hormone replacement therapy, from HeartInfo, a Web site on heart disease
Amazon.com's page on Dr. Susan Love's Hormone Book
Excerpts from Dr. Susan Love's Breast Book
Proof that breast cancer research is "work in progress"