Dr. Barron Lerner Discusses the
History of Breast Cancer Treatment
Through the 20th Century

Fresh Air / WHYY / NPR 24may01

TERRY GROSS, host: This is FRESH AIR. I'm Terry Gross.

Many women live in fear of getting breast cancer. Not too long ago, if a woman went into surgery for a breast biopsy, and the tumor was malignant, she was likely to wake up and find one of her breasts removed without having had a chance to consult with the doctor or emotionally prepare herself. Now women often face the opposite dilemma. They're so involved in difficult decisions they have to do research on their type of cancer and the latest treatments and often find themselves overwhelmed by the of information they need to absorb.

My guest Barron Lerner has written a new book about the history of breast cancer diagnosis and treatment in 20th century America. Lerner is a physician and medical historian who teaches at the Columbia University College of Physicians and Surgeons. I asked him why he's studying the history of breast cancer treatment.

Dr. BARRON LERNER (Author, "The Breast Cancer Wars"): Well, history, I think, is an important way to understand what we're dealing with these days. We often think, at times, that science is objective and doesn't have any influences from the outer culture. But indeed if you look back over time, you can understand how these cultural factors influence the way doctors and patients make medical decisions.

GROSS: Now your mother was diagnosed with breast cancer in 1977. What was the state-of-the-art treatment then?

Dr. LERNER: Well, that was an era of transition. In 1977, the radical mastectomy, the very large operation that had been used for decades, was finally beginning to fall out of favor and being replaced by the modified radical mastectomy, a somewhat smaller operation and in some cases even just breast removal and lumpectomies. And chemotherapy was coming in as well, and my mother was one of the earlier patients to receive chemotherapy for her breast cancer.

GROSS: How did she tolerate the chemo? How did chemo then compare to chemo now?

Dr. LERNER: Chemo then was pretty rough. It was a tough go for her, and, you know, she obviously made it through and has done well over time, but I remember her being in bed a lot, being very nauseated and having a very tough time of it. Chemotherapy today is much improved with less side effects and less toxic doses in general, so there's been a lot of progress.

GROSS: How have your thoughts changed from the '70s to now about what's responsible for her survival from breast cancer?

Dr. LERNER: Well, it was interesting while working on the book that a lot of the stories that had circulated in the family for many years got questioned as I looked at some of the data. So we had told the story over time that my mother had survived because she'd had an early breast cancer, that it had been detected early and that the chemotherapy had saved her life. And another issue that came up was that many of my mother's friends couldn't deal with it and didn't see her much. And as I researched the book, it became clear that this story, like many stories of women with breast cancer, get written over time in interesting ways that women need to do.

So, in fact, my mother's breast cancer was not really detected early, for example. She had spread to her lymph nodes. And the chemotherapy, which may have been extremely helpful, may or may not have cured her. It's conceivable the surgery alone might have cured her. And even the last topic I think became a little more problematic. I think to some degree my mother herself, by withdrawing and dealing with the breast cancer in the way that she did, may have influenced some of her friends not to try to be more sociable and to back off a little bit. So some of the family myths and lore got questioned.

GROSS: Have you talked to her about some of the ways that you've questioned the family stories about her survival?

Dr. LERNER: Well, it's been very--it's interesting, when I began working on the topic, I think she was a little reticent and not thrilled about it, although she was obviously sort of proud that I was working on it and writing a book. But I didn't really discuss it with her until I sent her a copy of my preface in which I mention her story. And given my typical family situation, she didn't call me. My father called me, as the interloper, and said, you know, 'We really should talk about how you discuss your mother's story.' And it was instructive for me, because they had spoken together and I had come up with my impressions and actually it was very useful because the three of us talked about it and I came up with what I felt was as good and realistic a story as possible.

GROSS: And your mother's OK with that?

Dr. LERNER: Yeah. She's OK, and she sort of gave the OK to what I wrote in the book now. And I think she's hopefully learned a little bit about how she responded from my understandings of breast cancer in general.

GROSS: Doctors stress the importance of early detection of breast cancer. Before mammograms and before the emphasis on self exams, how far advanced was breast cancer typically before it was diagnosed?

Dr. LERNER: Breast cancer in the early 20th century was a dramatically different disease than we see today. Women very often watched lumps in their breasts grow and grow. There was no sense of urgency about what to do because many women thought it was a death sentence. And the cancers, by the time the women made it to the doctor, were often inches in diameter, and they often took up a large, large portion of the breast. It was very, very different than today and, in fact, the earliest efforts of the American Cancer Society when it was founded in 1913, was to say, 'Look, you can't sit and watch these things grow. If you see anything or feel anything in your breast, please go to a doctor right away.'

GROSS: And at the beginning of the 20th century when a woman discovered a lump in her breast and went to the doctor, what could the doctor do about it?

Dr. LERNER: Well, before William Halsted, who was a famous surgeon, there wasn't much. They often did a sort of a superficial operation, maybe just removing the breast, which often just removed the lump itself, which sometimes had ulcerated and was foul-smelling. What Halsted decided was, 'Look, we can do more for these women. If we do a large enough operation, we can perhaps get all the cancer out.' So what Halsted decided to do in the early 20th century was to remove not only the breast, but the lymph nodes near the breast and both muscles on the chest wall. So this was a dramatically large operation, but Halsted felt for the first time he could offer cures to women with breast cancer who otherwise would have died.

GROSS: And he was the creator of the radical mastectomy.

Dr. LERNER: I would say he didn't create it, he popularized it. There were other doctors who had done similar types of operations before, but he was really the one who embraced it and said, 'Look, this is something we can really use if we get enough women to take it.'

GROSS: And who eventually challenged him and why?

Dr. LERNER: Well, Halsted--the radical mastectomy retained an enormous amount of popularity for decades. Halsted himself was a surgical icon, was actually--had started the training programs for subsequent surgeons. So he sort of had a group of folks who would listen to whatever he said and were very impressed with the operations he devised, one of which was the radical mastectomy. And they sort of went out around the country, became professors of surgery at other places and taught their trainees the radical mastectomy.

It wasn't really until the 1950s when a few doctors began to question the radical mastectomy.

GROSS: On what grounds?

Dr. LERNER: Well, they were very clever. What they said was when Halsted had devised the operation, it was very, very valuable, but what was happening by the later era was that cancers, when detected, were smaller. By this point the American Cancer Society was getting women to do breast self-examination, cancers were smaller. And the doctors who began to question this, most notably a Cleveland surgeon named George Crile Jr., known as Barney Crile, said, 'Look, this operation is either too much or too little. In cases where the cancer is small and seems localized to the breast, why are we taking out so much tissue? Let's just remove the breast itself.'

And on the other hand, if these cancers were actually very widespread, the operation probably was not enough. There was probably cancer elsewhere in the body that would eventually kill the woman.

GROSS: Well, in fact, that leads to what you say has been called super radical surgery, where if the cancer had spread not only was the breast removed, but other organs and limbs believed to contain cancer were removed. How far would that surgery go?

Dr. LERNER: Well, you know, this is a story I don't think a lot of people remember, even people who are in the world of medicine. In the 1950s, there was an enormous amount of very aggressive surgery done for not only breast cancer, but other cancers. The sense was that cancer grew in a very orderly manner, that the cancer started very small, grew gradually larger and larger. So if you could remove enough tissue in the area that contained the cancer, you could cure women. So in areas besides the breast, for example, this was the first time doctors began to remove large portions of patients' livers, up to 80 percent of patients' livers, in order to try to cure liver cancer. There was an operation called the exenteration, in which a woman's pelvic organs were all removed if she had gynecological cancers, cancer of the uterus that had spread. And in the area of the breast, what the doctors began to do was actually remove part of the rib cage to try to get to these elusive cancer cells. So women not only lost the breast and the lymph nodes and the chest wall muscles, but part of the rib cage. So there was a dramatic degree of disfigurement for these patients.

GROSS: But was the surgery ever effective?

Dr. LERNER: Well, that's one of these tricky questions. At the time, obviously, the advocates of such surgery said that while they realized that in certain cases the surgery was not going to be curative, they did think there were some women in which they had just gotten enough tissue that the women were going to be cured. It was very hard in the 1950s to prove any of these things, because the techniques for evaluating these types of procedures were in their infancy. But what do we know is that over time even the doctors who advocated these things began to suggest that they probably weren't that effective and the women were simply being too deformed by them to continue. So these things largely disappeared. Once in a while you'll still see them for someone who has very, very advanced cancer.

GROSS: My guest is Dr. Barron Lerner, author of "The Breast Cancer Wars." More after a break. This is FRESH AIR.

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GROSS: If you're just joining us, my guest is Dr. Barron Lerner, and he's a professor of medicine and public health at the Columbia University College of Physicians and Surgeons. He's also the author of the new book "The Breast Cancer Wars," and it's basically a history of how breast cancer has been treated through the 20th century.

You mention that Barney Crile was the surgeon who most effectively challenged the radical mastectomy, and he started performing operations in which he just removed the breast or just removed the tumor. His wife had breast cancer and died, and then he remarried. His second wife had breast cancer, too, and I believe she survived. What kind of treatment did he recommend to his wives?

Dr. LERNER: Well, this, of course, is one of the fascinating stories that I was able to uncover. Barney Crile, again, had begun to say, 'Look, you did not need to do these very aggressive operations for women with breast cancer.' Then in 1959, his first wife, named Jane Crile, developed a breast cancer, and the surgical community was sort of waiting with bated breath to see what was going to happen once the word got out. And I think that most of the surgeons believed that in his heart of hearts Barney Crile would suggest to his wife that she get the Halsted radical mastectomy. It was one thing to sort of be a crusader in general for women, but it was another thing when it was your wife. You had to do the best.

What was quite amazing is that Crile stuck to his guns and said, 'It's my wife, yes, but I believe the best treatment for her is what I would recommend for any woman in the circumstance. I believe she should just have her breast removed.' What wound up happening, unfortunately, was that Jane Crile developed metastases, the spread of the cancer, to her brain and died in 1963.

The other doctors in the medical community, not surprisingly, were quite appalled by this and felt that in a sense he had, quote, "murdered" his wife. And obviously they didn't say it to his face, but they really felt that they couldn't believe that he had done this. But to his credit, he stuck to his guns and said, 'Look, as much as this death is terrible and this hurts me, the fact is that she undoubtedly had small amounts of that cancer sitting in her brain at the time of the original surgery, and if she'd had a much larger operation the fact is she would have spent the few remaining years of her life with a very large, disfigured area on her chest wall, and we were able to spare her that.'

So that was the story of Jane Crile. Ironically, when Barney Crile got remarried to Helga Sandberg, who's actually the daughter of Carl Sandburg, she developed breast cancer. This was in 1974. And a not dissimilar thing occurred and Helga Sandberg, this now being the 1970s, an era in which women themselves were much more involved in making the decision, but in consultation with Barney, Helga and Barney decided that a lumpectomy was going to be adequate for her breast cancer that was very small. And again, when I interviewed Helga Sandberg, she told me that at medical meetings doctors sort of snuck up to her when Barney wasn't around and said, 'Look, Helga, please go get yourself a mastectomy. You shouldn't be doing this.' And she stuck to her guns and in this case, fortunately, everything has worked out well, as she's now, I think, about a 27-year survivor.

GROSS: Now when did the lumpectomy become an accepted procedure?

Dr. LERNER: Well, people had begun to experiment with the lumpectomy as early as the 1950s. By the 1970s, it was getting much more attention, although it was not recommended by most doctors. But a patient who came in and really was insistent and had a small, small cancer that seemed not to have spread, doctors began to be willing to do this. But it wasn't really until the late 1980s when lumpectomy, usually accompanied by radiotherapy, became a standard treatment for breast cancer. And that's because in 1985 the New England Journal published randomized controlled trials, in other words, the gold standard for evaluating medical procedures. These were randomized controlled trials that showed, indeed, that women treated with lumpectomy and radiation did as well as women who had larger operations, be it a regular mastectomy or a radical mastectomy.

So all of that speculation that had been going on for decades by people like Barney Crile turned out to be true.

GROSS: You studied medicine in the 1980s. What are some of the things that you were taught about breast cancer and about women who had breast cancer?

Dr. LERNER: Well, I have--it's an interesting connection to all of this. I was a medical student at Columbia University, and one of the most famous breast cancer surgeons of the 1950s and '60s was at Columbia University, a doctor named Cushman Hagenson(ph), who really put breast cancer on the map. And Hagenson used to do these very elaborate five- and six-hour radical mastectomies where he tied off each individual blood vessel and refused to use a cautery, which burns away tissues. And there are these legendary stories of students and residents standing there for hours and hours while he did this very, very meticulous operation that had become practically legendary.

This was just fading out when I was a medical student, so some of the doctors that Dr. Hagenson had trained who I scrubbed in with on surgery weren't quite the perfectionists that he was, but some of them still did these very, very long breast operations where they felt that if they did anything wrong at all they might risk putting a cancer cell into the bloodstream, and you had to be very, very meticulous. So that was just the tail end of the era in which this type of surgery was done.

Chemotherapy was coming in as I was a medical student, and this was getting much more emphasis, the notion that breast cancer is probably a systemic disease. In other words it's probably spread around the body, often in an invisible way, even at the time that a small lump is found. So this was just coming in, and this was exciting, but it really threw the understandings of breast cancer on its head.

GROSS: Were the doctors who taught you believers in the radical mastectomy, and is that the procedure that you were taught?

Dr. LERNER: By the time I was a student, the modified radical mastectomy was really being done almost exclusively. Periodically a woman would still get a radical mastectomy. But I think that the lore of the radical mastectomy died slowly, and the notion that this very carefully performed surgery and that bigger operations were still better was still hanging around. And it was very hard for many people, many of the teachers I had, to really give up on that. They'd all been trained that way. They all had a hunch still that more was better. And the studies were starting to show that what they had learned and what they believed for so, so long was probably not true. It's very difficult for anybody, probably particularly a surgeon, to say toward the middle or the end of their career, 'You know, all that stuff that you learned, probably untrue and you've got to change your ways.' There were some surgeons who were able to do that, but others really stuck to their guns for too long.

GROSS: Dr. Barron Lerner is author of the new book "The Breast Cancer Wars." He'll be back in the second half of the show. I'm Terry Gross, and this is FRESH AIR.

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(Soundbite of "Highway 61 Revisited")

Mr. BOB DYLAN: (Singing) Oh, God said to Abraham, 'Kill me a son.'

GROSS: Today is Bob Dylan's 60th birthday. Coming up, rock critic Ken Tucker considers Dylan's recent works. And we continue our conversation with Dr. Barron Lerner, author of "The Breast Cancer Wars."

(Soundbite of "Highway 61 Revisited")

Mr. DYLAN: (Singing) The next time you see me coming you better run. Well, Abe says, 'Where do you want this killing done?' God says, 'Out on Highway 61.' Well, Georgia Sam he had a bloody nose, Welfare Department they wouldn't give him no clothes. He asked poor Howard, 'Where can I go?' Howard said, 'There's only one place I know.' Sam said, 'Tell me quick, man, I got to run.' Ol' Howard just pointed with his gun and said, 'That way down Highway 61.'

Well, Mack the Finger said to Louie the King, 'I got 40 red, white and blue shoe strings and a thousand telephones that don't ring.'

GROSS: This is FRESH AIR. I'm Terry Gross.

We're back with Dr. Barron Lerner. He's a physician and medical historian who's written a new history of breast cancer diagnosis and treatment in 20th century America. It's called "The Breast Cancer Wars." He teaches at the Columbia University College of Physicians and Surgeons.

Let's get to the 1970s and this is the era in which the feminist health care movement starts to take a really active role in addressing breast cancer. And you have a lot women who became known for their breast cancer activism, including, Rose Kerchner(ph), Betty Rollin, Betty Ford had breast cancer during this period. What were some of the feminist critics of how the medical profession was dealing with breast cancer?

Dr. LERNER: The way medicine dealt with breast cancer in the 1970s was incredibly different from now. In the 1970s most physicians who treated breast cancer were male, most physicians were male. And they had been doing it their way for many, many years. This obviously usually entailed the radical mastectomy. But beyond the radical mastectomy, the way that decisions were made were that a woman would come into the office, the doctor would feel a lump, perhaps that the woman had found, and the doctor would simply tell the woman, 'You need to check into the hospital and I'm going to do an operation. And, here, sign this form.'

And the form was an early version of a consent form that not only gave the doctor the ability to do a radical mastectomy, but gave the doctor the ability to do that while the woman was under anesthesia.

GROSS: You mean to make the decision while she was under anesthesia.

Dr. LERNER: To make the decision. So in other words, what they would do would be to do the biopsy while the woman was under anesthesia, go to the laboratory and see if it was cancer or not. And if it turned out to be cancer, the doctors would then proceed with the radical mastectomy. As a result, women awoke from surgery without knowing whether or not they were going to have had a breast removed or not. For many years, most women did not object to this state of affairs. But by the 1970s as feminism and women's liberation were emerging, this type of arrangement was increasingly unsatisfactory for many women.

Women had begun to question health care in other areas. Most notably, if one thinks back to Our Bodies, Ourselves and other publications like that, women had begun to question the ability of male doctors to make decisions during reproduction and when women were giving birth. And in the case of breast cancer, the same thing happened. Women began to go to doctors and say, 'You know, wait a minute. I want to wake up and help make the decision. I want to make the decision. I'm willing to take your advice but I would like to know whether or not I have cancer. And then to be able to talk about it with other people, perhaps to see other doctors, and then to make a decision about what type of operation that I want.'

GROSS: Now wasn't part of the medical thinking here that time is of the essence? 'Let's not waste another week while a woman studies up and makes up her mind. Let's perform it right now before more cancer cells spread.'

Dr. LERNER: That's quite true. At this time, people thought that breast cancer and other cancers, for that matter, were emergencies, that you needed to get to these cancers as soon as possible, to do as large as an operation as possible right away. In retrospect, that wasn't true as we know now. So that was part, I think, of what was going on. It was a true medical belief that this was something that was urgent. But I think also what was going on was an issue of control. I mean, I think that doctors at that time really didn't want to hear women questioning what they were going to do. They didn't want women to go see other doctors and get second opinions and the state of affairs as it was enabled them in essence to silence women patients. They weren't doing this because they were horrible people, but male doctors were used to running the show and they didn't like women interfering with the way things were occurring.

GROSS: Is the medical belief now that breast cancer spreads much more slowly than they believed it spread in the '70s?

Dr. LERNER: Well, we know now that none of these operations are really emergencies at all and breast cancers grow very, very slowly. Women who find a lump in their breast that perhaps one or two centimeters in size, we know that that's probably been growing five to 10 years. And, as a result, whether you get an operation in three days or three weeks really doesn't matter that much. Now it matters, oftentimes, from an emotional perspective and I understand completely how women, once they find a cancer there, they want the doctors to get it out right away. And that's understandable. But it's important for them to know that from a medical perspective, they're not going to really do any worse if the operation's delayed a little bit.

GROSS: So what do you think are the most important ways that the women's health care movement changed the way the medical profession dealt with breast cancer.

Dr. LERNER: Well, I think the women's health movement contributed in many ways. The first and most important way was that they forced doctors, male doctors in particular, even women doctors, to listen to the patient. Again, the standard in the 1970s was for doctors to make the decisions. Occasional patients would object but most patients would simply do what the doctor said. And what women in breast cancer activism did for women with many diseases, for all women in fact, announced through women's journals--I'm sorry, women's magazines, for example, and newspaper articles, that it was OK to talk back to your doctor, it was OK to even go to the library and read up about your breast cancer. It was OK to talk to other women and, in fact, other women often knew as much or more about certain aspects of breast cancer than doctors did.

For example, doctors paid very little attention to the emotional aspects of breast cancer. I heard a story about a doctor who once said to a woman who was complaining about the fact that she'd lost her breast and emotionally devastating it was, said to her,'Oh, come on. Go stuff an old stocking in your bra and get on with your life.' Now that was a particularly harsh way of dealing with this patient, but the attitude was not dissimilar of other doctors. Many people at that time felt, 'Look, isn't it most important that we save your life? Can't you deal with the loss of a breast?'

Another thing that women emphasized to doctors and Betty Rollin, being a very important person in this regard, saying it was OK for women not only to think about their lives but also to think about how they were going to look and how they were going to feel after their operation. It was OK, as Betty Rollin put it, to feel--to announce to a doctor, 'Hey, I'm vain. I not only want to live from this disease but I also care about how I'm going to feel.

GROSS: Well, I'll tell you what, let's take a short break here and then we'll talk some more. My guest is Dr. Barron Lerner. His new book "The Breast Cancer Wars" is a history of how breast cancer has been treated by the medical profession during the 20th century. This is FRESH AIR.

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GROSS: If you're just joining us, my guest is Dr. Barron Lerner. He is a professor of medicine and public health at the Columbia University College of Physicians and Surgeons. He's also the author of the new book "The Breast Cancer Wars." And it's a history of how the medical profession has dealt with breast cancer over the course of the 20th century.

There is still a strong emphasis on early detection and early treatment of breast cancer and mammography is considered very important in that equation. The detection of early breast cancers and the detection of what's called precancerous cells has become kind of controversial. What is the controversy around the detection of these, quote, "precancerous cells?"

Dr. LERNER: Many years ago when the breast cancers were very, very large, early detection was a crucial thing to inform women about. If you came to a doctor with a breast cancer that was a few inches in diameter, you were very likely to die. And the early activists insisted to women that they had to try and find these things earlier. And a lot of progress has resulted from that. Cancers that are, for example one centimeter or two in diameter, compared to the larger ones, do better on average.

What we've come to now, though, is many of the early detection modalities that are used find not only very, very, tiny cancers, but things that are called precancers or abnormal cells. Thinks like carcinoma in situ. And while it's important to find these things, our ability to help women with them is less dramatic than our ability to help women with actual cancers. In other words, if you find a cancer and take it out, it's pretty clear that that cancer, sitting there for long enough will probably do harm. But it's less clear in the case of carcinoma in situ and other precancerous lesions that you might find in the breast. But because early detection has gotten so much emphasis, the fact that there are limits to what early detection can accomplish and that early detection leads to a lot of biopsies that are unnecessary and a lot of unnecessary worry, often gets downplayed.

GROSS: So what are both sides saying now about who should get mammography, who should get mammograms?

Dr. LERNER: Well, mammograms are very controversial, particularly for women in their 40s. The folks who advocate mammography are the strong early detection advocates. They say that if you do mammograms in this population you will find cancers that would ultimately cure women and it's crucial to do this. They realize that there are possible side effects, that there are unnecessary biopsies, but when you have the opportunity to cure women, you should go and do it.

The opponents really don't disagree with a lot of that, and part of what I found is that there's not a lot of disagreement about what the data show for women in their 40s with respect to mammography. What matters is the way in which the existing data gets spun. So the advocates spin it by saying, 'Look, if you do enough mammograms, you're going to lower the mortality rate and cure some women.' But what the people who are cautious about this suggest is, 'Well, you might do that, but, meanwhile, you're going to spend an enormous amount of money, you're going to have to screen thousands of women to find one cancer that you can cure. And we need to think about how we devote our health care resources to a problem like this. Maybe, even if there's a possibility that you're not going to cure every single woman, maybe we should reexamine the dogma of early detection.'

GROSS: What do you think is the most exciting prospect on the horizon in treating breast cancer?

Dr. LERNER: Well, there are a lot of exciting things that are going on. I think that probably the main development over the past few years that people are excited about is Perceptin, which is a new type of treatment, a biological agent that attacks specific types of cancer cells in women with metastatic breast cancer and possibly women who have earlier cancers. There are trials going on now. The exciting thing about a treatment like this is that instead of chemotherapy which kills all cells in the body as a way to kill the breast cancer cells. These biological therapies or more directed therapies are aimed specifically at the cancer cells themselves and, in general, are better tolerated for women than chemotherapy.

On the other hand, to switch gears, another exciting thing which is occurring, I think is that there's growing attention to the environment and potential environmental causes of breast cancer and this is an area that hasn't gotten enough attention, I think, over time. And people again are starting to ask what they can do, what can women do, what can government do to try to look at least at the issue of toxic exposures and the potential that toxic exposures predispose women to breast cancer. It's not nearly as sexy a topic as an exciting, new biological agent, but the hope is that both of these types of areas of inquiry can go along together.

GROSS: With the new knowledge about genetics, some women have been able to find out that they are genetically predisposed to breast cancer. And some of those women who know that they're genetically predisposed have chosen to have one or two breasts removed as preventives. I mean, they haven't had any cancerous cells detected. But this is to prevent cancer of the breast from ever developing. Did you do any research into that? Have you given that a lot of thought about the kind of social and medical significance of that preventive surgery?

Dr. LERNER: Well, the preventive surgery that's going on now, in a sense brings us full circle from the early part of the 20th century. One hundred years ago, Halstead(ph) argued that more surgery was necessarily better. And while that lessened over time, it's come back now in an interesting way. Because women can be genetically tested, they can find out, in fact, if they are at very, very high risk of having breast cancer in the future. Now there's no guarantee that they will get breast cancer at all. The estimates range from 50 to 80 percent chance. But an individual woman may never get breast cancer. But some of the women who test positive for the genetic mutations are indeed opting to have their breasts removed, as well as their ovaries because the gene also predisposes to ovarian cancer.

What I think is important is that we emphasize that this is probably something that is right for a small number of women but not most women. There are certain women who have either had breast cancer themselves or whose families have been entirely damaged by cases of breast cancer. And indeed the breast, as one woman told me, becomes almost an albatross around their neck. They're so nervous about getting breast cancer that it practically interferes with their getting on with life. If they test positive and they think about it and want their breasts removed, it might be a very logical thing for them to do. It will probably lower their chance, although not to zero, of getting breast cancer in the future.

But I think most women and other women should not rush into this. It's not a cure-all. There's still a chance you might get breast cancer and there's a chance that you might regret having done this after the fact. There's a good possibility that these women will develop breast cancer but it's far from a guarantee. And the genetic technology is only in its infancy and we're only beginning now to understand how it works.

GROSS: How can a woman who has a breast removed eventually still develop breast cancer?

Dr. LERNER: Well, you can't ever get all the breast tissue. So when they remove both breasts preventively, they try to get as much of it as they can. But there's always a little bit left behind. And the same forces in the body that would make you develop cancer in a complete breast can conceivably cause breast cancer in the small areas of tissue that remain near the chest wall or near the shoulder.

GROSS: When you decided to do a medical history, why did you focus on breast cancer? Why not another form of cancer or another disease altogether?

Dr. LERNER: Well, I think that breast cancer is a very important story for several reasons. It's become the quintessential activist disease, I think. If you look over time it's always--people involved in breast cancer have always been trying to push it to the forefront and saying, 'If we can do something about breast cancer, it can help us with cancers in general.' I think this has happened because the breast holds such cultural significance. On the one hand, for many years it was very difficult to talk about breasts in public in the United States. And I think that impeded some of the early efforts of the Cancer Society. But once that changed in the 1970s and society became more open about discussing breasts, it became an opportunity to say, 'Look, breasts are very important, breasts hold an important cultural status in the United States, let's do what we can to preserve breasts and to make sure that women don't die from breast cancer.'

So in an interesting way, the earlier secrecy was channeled into a new type of activism and I think it's no surprise that women have been successful at getting attention in Congress by wearing a pink ribbon and talking about breast cancer. Indeed, activists for other cancers, I think, are at times envious of the success that the breast cancer activists have had. And I think that it stems from the fact that it's of natural interest to people that the whole issue of sexuality, do you have to lose your breasts or not, how are you going to look after your cancer treatment--these are all very compelling issues and that made it interesting for me to study as a historian.

GROSS: Dr. Lerner, I want to thank you very much for talking with us.

Dr. LERNER: OK.

GROSS: Dr. Barron Lerner is the author of "The Breast Cancer" wars. He teaches at the Columbia University College of Physicians and Surgeons.

Today is Bob Dylan's 60th birthday. Coming up, rock critic Ken Tucker on Dylan's recent work.

This is FRESH AIR.