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Dr. Susan Love
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What’s not to love about Dr. Susan Love?
Published Thursday, 13-Oct-2005 in issue 929
She’s impatient with the “same old” breast cancer treatments – and is now determined to eradicate breast cancer altogether. Here’s why medicine’s most lovable maverick is in such a hurry.
If you or someone you know has breast cancer, Susan Love wrote the bible. Not that bible – rather, the 1990 best-seller Dr. Susan Love’s Breast Book, a girl’s guide to navigating one’s way around the doctors, the jargon, the treatment options – and the confusion – surrounding a diagnosis of breast cancer. The book is out in its fourth, updated edition this month.
As co-founder of the National Breast Cancer Coalition, Love is one of the founding mothers of the breast cancer advocacy movement. She started the first all-women Breast Center in Boston before moving on to develop the model for multidisciplinary breast care at UCLA’s Revlon/UCLA Breast Center. She has been a surgeon at prestigious institutions like Harvard and the Dana Farber Cancer Institute. She is one of only a handful of medicine’s media celebrities.
But she holds the fascinating distinction of being both a medical-community insider, as a surgeon who has trained and taught at the most prestigious medical centers, while also being an outsider who has consistently and loudly challenged medicine’s status quo.
Love went to medical school, completed residencies and forged her way to becoming a surgeon at East Coast institutions in the early 1970s – and she did all of the above as an out lesbian, at a time when women rarely became doctors and rarely came out.
Love was one of the first, and loudest, to oppose the practice of radical mastectomies. She was among the first to sound the alarm about the possible dangers of postmenopausal hormones.
And these days she is openly impatient with the treatment regimens used to treat breast cancer: surgery, radiation and chemotherapy.
“Women deserve better,” she has written, calling for a “revolutionary approach” to prevention research. In fact, Love’s research organization, the Dr. Susan Love Research Foundation, has vowed to work to eradicate breast cancer within 10 years, by 2015.
After the publication of Dr. Susan Love’s Hormone Book in 1997, which questioned the widespread use of postmenopausal hormones, that same year the June 9 issue of The New Yorker contained an article titled “The Estrogen Question: How Wrong is Susan Love?” Love was vindicated in the summer of 2003 when a landmark study linked the use of hormone therapies to breast cancer, heart disease and stroke. Millions of women stopped taking hormone therapies, and the medical establishment did an about-face.
Love has recently come into the spotlight again as a supporter of Melissa Etheridge, who recently battled breast cancer and who has selected the Dr. Susan Love Research Foundation as the recipient of the proceeds to Web downloads of her song “I Run for Life,” which Etheridge recorded for breast cancer survivors.
Love is currently clinical professor of surgery at UCLA’s David Geffen School for Medicine. She has also founded the companies ProDuct health, Inc., and co-founded LLumanari, Inc., a consortium of spokespeople addressing public health issues. The company will host a “Women Thrive” conference for women with cancer in La Jolla at the end of October.
Love spoke to the Gay & Lesbian Times from her office in the Palisades area of Los Angeles, where she also lives with her partner of 23 years and their daughter, Katie.
Gay & Lesbian Times: You have gone beyond clinical practice as a surgeon to becoming a national spokesperson on breast cancer and the issues surrounding breast cancer. What is it that we’re not getting about breast cancer in our society?
Susan Love: I think we’ve – in the effort to increase awareness and to really get people saying the words and talking about it, which is a good thing – we’ve also over-simplified it a lot. So what you’re seeing, with the pink ribbons out there and everything else, is a pretty simplistic message, which is not necessarily congruent with the science. So people have the sense that if you just find your cancer early, when it’s small, you’ll be cured and everything will be great. It’s really just not that simple.
GLT: Where can people get the full message? And what can the average person do?
SL: Certainly on my Web site we try to keep people ‘abreast’, as we say, not just with the latest news report, but then we analyze and critique and try to put it into context for people. For example, one of the questions that has already been a surprising one is that: Even if everyone over 40 had a mammography screening, we would still only reduce the death rate of breast cancer by about a third. And the sense that people have sometimes is that, “Oh, people aren’t just going to get it,” or, “It’s just that the screening’s just not good enough.” But the latest data is suggesting that the biology of the cancer is not such that it grows in a linear pattern – you know, from a grain of sand to a bee-bee to a grape to a lemon to a grapefruit – and that it’s possible to get there before it spreads. It’s turning out that rather than the one or two types of cancers that we used to talk about based on how they look under the microscope, there may well be six or seven different types based on the DNA mutations. And some of these types are so bad that it doesn’t matter when you find them, those people are going to do badly. And there are some kinds that are so good that it doesn’t matter when you find them, those people are going to do good. And then in between there may be – and it’s about 30 percent – where you might be able to make a difference. So, we’ve been oversimplifying by telling everybody, “Get your mammograms.” You know, “Find your cancer.” And that’s just not entirely true. … There are a lot of people who do everything right and just aren’t lucky.
What can people do besides walking, running, wearing pink? I think it’s time for us to go to the next step. I was involved in a lot of this when we started the breast cancer advocacy movement in 1990, which is to get people to say the words; to talk about it out loud; and to increase the funding for breast cancer research. Now in October, you’re tripping over pink everything – I think even pink toilet paper, so you can wipe for the cure if you want to go to that extreme. The walks and the runs and the companies that are supporting breast cancer are not bad; probably the majority of them are well-meaning. But I think what most of us on the consumer side have to start doing is asking further questions about “What are they doing with the money, and what research are they funding?’”
GLT: How has the medical climate for women who have cancer changed since your days as a resident in the 1970s at Beth Israel in Boston? Not just medical science, but how has medical culture changed since your residency days?
SL: Well, you have to know that when I went to medical school there were still quotas as to how many women were allowed to go. It was between 5 percent and 10 percent. Many schools said to me, “Sorry, we already took our quota.” And it was pre-women’s lib and we said, “Well, OK.” Because that was the way it was. Then about halfway through, when women’s lib came along and they opened things up and made it sex-blind … it went from about 5 percent to about 20 percent in a year. By the time I went into surgery, still there had been no women, pretty much. I was the second woman ever to finish the surgical training program at Beth Israel Hospital Boston. I was the first woman general surgeon on the staff. So things were very different.
In some ways, part of how I got into the breast cancer field was because of that. In those days the only people who did breast surgery were not very good surgeons and couldn’t do big operations – and so they would give them the breast. Or people who were retiring, and trying to slow down – they would take the breast. So it was really not a prime place for a surgical career. And I was bound and determined they weren’t going to force me into being a breast surgeon just because I was a woman. So I went into practice, and they never sent me anything else. I mean, nobody would refer a guy to a woman surgeon in those days. So the patients that were sent to me tended to be women with breast problems. And it became clear to me that they weren’t being very well-treated. It was still the days of, “Don’t worry, dear. We’ll take care of you.” And no information was given, and women were still being given mastectomies even though the data had started to come out that breast conservation was just as good. So it became clear to me that I could make a bigger difference in the breast field than I could in other fields. But people said to me, “You’ll never make a living as a breast surgeon. …”
GLT: How have your years as a surgeon at Dana Farber and at Harvard influenced the work you do at the foundation, and the work you do with Lluminari as a spokesperson about breast cancer?
SL: I always have said that being an out lesbian woman surgeon at a time when there were no women surgeons and certainly not out lesbian surgeons has been an important factor in my career, because it allowed me to be an iconoclast in a way that I probably couldn’t have done otherwise. Because I knew, from the get-go, I was never going to be part of the club. They were never going to invite me to the Boston Surgical Society or any of those groups. Because I was a woman. Because I was an out lesbian. And therefore, they couldn’t hurt me. You know, I could say what I thought was right and they could never throw me out because they’d never let me in anyway.
GLT: You’ve stated a goal of eradicating breast cancer in the next 10 years, by 2015. Is that seen in the medical community as something that’s actually doable? In a nutshell, what needs to happen to make this possible?
“I knew, from the get-go, I was never going to be part of the club. They were never going to invite me to the Boston Surgical Society or any of those groups. Because I was a woman. Because I was an out lesbian. … I could say what I thought was right and they could never throw me out because they’d never let me in anyway. “
SL: I think we’ll have it in the next 10 years. I think that by 2015, if we have it not 100-percent eradicated, we’ll be pretty close. And it’s because we have the means to do it. It’s not just a helpful slogan. We really are halfway down that road. If you think about it … we couldn’t until very recently get to where breast cancer started. It all starts in the lining of the milk ducts, and we had no way to get there. Now we have a catheter; we have a way to get in through the nipple into the milk ducts. And that means, for the first time, we can start to figure out not, “What is cancer?” but, “What are the conditions that lead to cancer?” … So the way to figure it out is there. And likewise we have animal data and we’re starting studies in women where you potentially could squirt something down the duct – I like to term it Drano, but it could be called anything – that could prevent breast cancer. Because breast cancer starts with this build-up of cells in the lining of the milk ducts. And so if you could squirt something in the lining of the ducts to clean that out, you could certainly prevent breast cancer. And we have data in mice and rats that [indicate that] indeed we can do that. And so we’re taking that now to women.
GLT: What can the average person reading the Gay & lesbian Times do?
SL: The one thing that I would say particularly to the gay and lesbian community is, I think it’s as important for them to think also before they pink. There’s a lot of fund-raising that’s done in the gay and lesbian community for breast cancer. But a lot of it goes to the same old stuff. Here we are, I’ve got a small non-profit trying to do radical fringe stuff … We should look at the community and we should support each other. Hope that’s not too self-serving….
GLT: Why did you write The Breast Book in 1990, and what inspired the new edition of the book?
SL: When I first wrote it in 1990, it was because I had a very busy practice and I had really figured out how to explain most of the common things in breast cancer, but I found that most women were not being given a lot of explanation. This was before it was popular to actually have doctors talk to patients. You know, it was more like, “Yep, you’ve got a lump. You need an operation. It could be cancer. Sign up tomorrow.”
So, my stated goal with the first edition was, a woman could be told that she has breast cancer on Friday and she could buy this book and by Monday she would feel informed, she would know what questions to ask. She would be empowered in knowing what were the things that were just this doctor’s bias, versus what were the things that we actually have facts and science about.
It was very much the time when breast conservation was just coming in, giving people the option of being able to have a lumpectomy and radiation as opposed to a mastectomy. Informing women that we were just starting to use chemotherapy when it was positive nodes in those days, and informing people that that was an option, and of how we thought it worked, and how we thought it all worked together. It was really an attempt to do that. I never realized it was going to turn into the bible. So the pressure is, every five years I update it. I go through the whole thing from beginning to end.
This year we have a lot more information for survivors. And the reason is in part that when we first started doing things like chemotherapy, we only gave it to women who had metastatic disease, most of whom at that time died. So nobody really cared about long-term side effects and nobody bothered to study them because it wasn’t really relevant to the population that were getting the drugs. Well, of course, now we’ve moved chemotherapy up front. We give it to lots of women who are going to do fine – or maybe because of, or in spite of, the chemotherapy. And so there are many, many breast cancer survivors out there who are living with the long-term side effects of these drugs, and we’re only just as a profession beginning to deal with, “What does that mean?” and what are the symptoms and consequences.
GLT: There’s a conference coming – Women Thrive – to La Jolla right after we go to press. Who is this conference for, and what is its purpose?
SL: The conference is really one for women who have had breast cancer, and also women who are caring for them. Often, the people who are caring are the forgotten ones, whether it’s a friend or a partner or a sister or a daughter. They often are the forgotten ones. So it’s not just for women with cancer, it’s for women who have been touched by breast cancer.
GLT: What did you learn from the experience with the medical community and the media, specifically Malcolm Gladwell and the The New Yorker, where your research into HRT was criticized?
SL: Oh yeah. Oh boy, I got a lot of shit from that one.
Well, I think my position as an out lesbian physician has really allowed me to be a truth-teller. One of my colleagues described me as the one who’s saying the emperor doesn’t have any clothes on. This is really the case with hormone-replacement therapy in post-menopausal women. It was getting to the point where every woman was being put on long-term hormone-replacement therapy allegedly to prevent diseases of aging, heart disease, stroke, dementia and some cancers. And as a breast cancer person, I was always a little leery because all the data suggests that hormones increase breast cancer. And so I then started to really look into the research, and I found out that not only did it increase breast cancer but that we had no real hard data to suggest that it prevented all these diseases. That most of it was hypothetical, or it was observational data where women on hormones had less heart attacks and less stroke and less dementia. … But the women who were on hormones also tended to be more prevention-minded … So you never really knew whether hormones made you healthy or healthy women took hormones. And until you did a randomized, controlled study, really there was no way to answer that.
So I wrote a book suggesting that we really didn’t know all the answers, and that we ought to be a little more careful before we put a whole generation of women on long-term use of hormones. And I got a lot of flack. To the extent that there was actually an article in The New Yorker; “How wrong is Susan Love?” was the title. And the OB-GYNs were out for my blood in general. And I really had a lot of bad times about it.
However, the Women’s Health Initiative came out in 2002, and – lo and behold – showed that hormone-replacement therapy, not only did it increase breast cancer – which was not a big surprise – but it increased heart attacks, strokes and doubles the risk of dementia. So I was definitely vindicated, although I must admit a lot of people who were die-hard believers still feel that there was something wrong with that study, and it still must not be true. … I think the great thing about the Women’s Health Initiative is that people are actually doing studies and trying to figure out what’s going on [with the second half of women’s lives], what’s causing the symptoms, and what we need to do about it, so I don’t feel the need to be so much on the forefront. … It wasn’t that I was the only one saying it [about hormone-replacement therapy], but I was the only one who was willing to go out on a limb and take a hit from the press.
GLT: And Malcolm Gladwell? Did he ever contact you?
SL: In private, but not in public. After the [study] came out, a few of my fans e-mailed him and said, “So are you going to apologize?” … He did e-mail me and say that he’d learned a lesson, and that he’d learned not to be quite so dismissive as he’d been. When you are out on a limb it can be pretty nice when you turn out to be right! Because it can be lonely out there sometimes!
GLT: Are there other issues for women and/or lesbians and cancer that you come across in your travels that we should discuss here?
SL: There was a time when there were a lot of studies suggesting that lesbians had more cancer. And, in fact, they do have a higher risk of breast cancer – if you’re looking at large cohorts – in general, than straight women. The reason is not anything particular about lesbian sex or particularly about lesbian lifestyle, but rather that one of the things that reduces your risk is an early pregnancy. And so lesbians are less likely in general to have an early pregnancy. Of course, there are a lot of people who are married first and then come out, and, of course, there are a lot of lesbians now who are having kids, and a lot of variations in between. But one of the things that reduces breast cancer risk is having an early pregnancy in [the] teens or early 20s. And another thing that studies show increases risk of breast cancer is … high consumption of alcohol and being overweight. Being heavier, particularly post-menopausal, increases your risk of breast cancer. So there are some aspects that I think lesbians need to be aware of that – not in everybody, but in some people – may be factors of increasing risk. Also, lesbians are less likely to go regularly to a gynecologist because they don’t need birth control. So they miss out, then, on getting regular pap smears and also regular breast exams and breast health. So there are issues, and I think we do need to be aware of it. But …, taking all of that into consideration, if you had a straight woman who was overweight, hadn’t been pregnant and drank a lot of alcohol, she’d have the same risk as a lesbian with the same characteristics.
GLT: What keeps you getting out of bed in the morning?
SL: My motivation is what I had said – and I can taste it: I know that we are very close to getting rid of breast cancer. We are very close to my fantasy, which is a sort of pap smear model, where you’ll squeeze a drop of fluid out of your breast duct and you’ll dipstick, and if it turns blue then you’ll go to the doctor, and we’ll figure out which duct it is, squirt some treatment down the duct, and you’ll be back to normal.
We’re close to that. I can taste it. And I really want to get that done before I die. I’m 57. My mother died when she was 58. So I don’t feel like I have forever. And so I’m on a mission, and I’m in a hurry.
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