Out the picture window above her desk on the UCLA campus, where she runs one of the largest and most ambitious breast centers in the country, the undulating ridgeline of the Bel-Air hills strikes Dr. Susan Love as looking like nothing so much as, well, breasts.
Love has become, in the past few years, the country's best-known advocate for the breast--a nationally known surgeon, author and inspired rabble-rouser in the accelerating grass-roots movement aimed at training more federal attention and money on understanding and preventing breast cancer.
The disease will strike 200,000 women in the United States this year. Some 47,000 will die from it. The overall rate of death has remained unchanged for decades, while the incidence has marched upward. If all women lived to age 85, a whopping one in nine would currently come down with breast cancer.
In 1990, Love co-founded the National Breast Cancer Coalition, a federation, now, of more than 180 support and advocacy groups demanding more money for breast-cancer research, a say in the direction of that research and a coordinated national strategy for research, prevention and treatment.
Since then, federal funding has jumped sharply--by Love's count, fourfold. And in October, President Bill Clinton announced that the Administration would develop a national action plan for breast cancer. Later this month, Love will co-chair a meeting in Washington to lay the groundwork for the plan.
Love, 45, hardly fits the surgeon stereotype. Tight brown curls frame an accessible, humorous face. Dressed in navy-blue slacks, a white lab coat and pearls, she sat through much of an hour-long interview at the UCLA Breast Center last week, elbows on knees, chin resting in palms, totally engaged.
On one lapel of her lab coat was pinned a button that reads, "Keep abreast. Get a second opinion." Behind her on the windowsill was a framed photograph of Love and Helen Cooksey, who has been her partner for 11 years, and their five-year-old daughter, Katie.
Question: To what extent is our ignorance about breast cancer traceable to the fact that it's a women's disease?
Answer: It's a combination of things. For one, breast cancer is difficult to figure out. We know something causes breast cancer but we don't know what it is. Could it be environmental, a virus, hormones? We don't know.
But another aspect, of course, is that it's a women's disease. I don't think the researchers are misogynists; I think if you're sitting there with a small pot of money, you will spend it on what you fear. And if you're a middle-aged white male, it's more likely to go to heart disease than breast cancer . . . . The reason we don't know more about breast cancer is that the people making the decisions didn't care enough about finding out those answers.
Q: What should determine how much federal research money goes to a disease? How many people it kills? How little is known about it? Who lobbies loudest?
A: How much is known about it is obviously important. More women die of lung cancer, but we know how to eliminate the vast majority of lung cancers. Whereas breast cancer, we don't have a clue. So that's one aspect of why more money should go into breast cancer. Another reason is that it is killing a large number of women.
I get a little bit annoyed at people who say, "You're trying to politicize research!" That's baloney. It's always been political. It just was a matter of whose politics was calling the shots. People are upset because now the women are getting angry and they want their politics reflected in where the research dollar is spent. I think that's totally appropriate.
From the beginning, the Breast Cancer Coalition has never tried to pit one disease against the other, but rather has always said we want a bigger pie. We don't want a bigger piece, we want a bigger pie. And indeed, most research money for breast cancer this year--the big increase--is Department of Defense money. This isn't money taken from one cancer to another; it was taken from the B-1 bomber.
Q: But even with a bigger pie, somebody ends up not getting what they want. Who should that be?
A: It's difficult to figure that out. Obviously, AIDS needs a lot of money. Breast cancer is a major problem. Prostate cancer is a growing problem. Researchers are arguing that we shouldn't earmark money; we should just sort of throw the money at them and let them investigate whatever the mood hits them. And that, ultimately, the answers will come. And, indeed, a lot of discoveries come, serendipitously, from studying something else. But a lot of the answers haven't come from that method. Breast cancer's been around for a long time . . . . In these days of diminishing pies . . . we don't have the luxury of just studying whatever we want. We have to specifically look at what are the pressing questions of the age and try to solve them . . . . A lot of emphasis has been on treatment. I would like to see more emphasis on prevention and on finding the cause . . . .
All cancer is genetic. A gene gets screwed up . . . . It may be that you had a normal gene and some carcinogen came along in the environment and caused a mutation. Or you could have inherited the bad gene from your mother. It probably is a couple of genes that have to fall together right. And what we're really on the verge of now is figuring out . . . what some of these genes are. Once we can figure that out, we maybe can figure out what causes the mutations and then maybe turn them off or switch them around or block them.
That's the way to deal with breast cancer . . . . We have a lot of the tools in molecular biology to make these kinds of discoveries. That's one reason we need a lot of money right now poured into this.
Q: Has the experience with AIDS--extremely effective activism, a dramatic increase in funding and now frustration that it hasn't paid off--led to any doubt about money being the answer?
A: Well, money is certainly not the only answer. But when the Breast Cancer Coalition started in 1991, breast-cancer funding was somewhere around $90 million. This year, it's $410 million. There's no question that that increase . . . has drawn a lot of new scientists into the field of breast cancer . . . . We've got new people thinking about the problem in new ways, simply because the money was there. So, that's important.
The second thing, though, which money can't buy, is new ideas and the breakthrough that you want. And some of that is just slogging along. Sometimes, you get lucky. Prostate cancer has a blood test. It's not because they threw tons of money at prostate cancer, it's because they got lucky.
Q: Has there been a backlash against breast-cancer activism?
A: Absolutely . . . . It's from a combination of places. One is from researchers. You'd think they'd be thrilled with more research money, but, instead, it's not about money as much as about power and who gets to make the decisions. And the idea that the taxpayer, the woman with breast cancer, is going to have any say in how money is spent is something that many people find offensive . . . . Even women who have been working in breast cancer for many years have had a backlash. Because suddenly, there's a lot of attention, and we're getting a fair amount of money, and the people who have been slogging along and haven't seen any progress over the years feel a little bit left out. So there's even some infighting amongst the breast-cancer movement.
Q: What do you make of the evidence linking pesticide residues in the food supply to elevated breast-cancer risks?
A: . . . A couple of weeks ago, I was in Long Island and we held a precedent-setting meeting where we called together environmental scientists and breast-cancer specialists and had a two-day seminar looking at these very issues--not only pesticides but electromagnetic fields, radiation, water contamination, a variety of different issues and how they relate to breast cancer. Most of them have not been studied.
In the previous Administration, the focus was on the individual; it was: What have you done to make you get breast cancer? We didn't look at society at all. Now, we're finally moving into (the view that) it's not just a problem of the individual woman; it's a problem of the whole society and the environment. And why is breast cancer increasing at such a rapid rate? There obviously has to be something going on in the environment. And why is it different in different countries? Some of it may be diet, some of it may be the things we poison the diet with. Some of those pesticides . . . have estrogenic effects and act like hormones.
So there's a lot of factors that need to be studied. The conference on Long Island was called by the activists. They raised the money, they brought the scientists in. And, as a result of that attention, the National Cancer Institute is going to have a study looking at it and there's more research coming out of it.
Q: You say there's obviously something in the environment?
A: I think there is something outside of the individual. Whether it is a virus, carcinogens in the pesticides, hormones in the beef and cattle, whether it's smog, whether it's cadmium--we don't have a clue. Breast cancer is much more common in this country than in Third World countries. It's much more common in high-socioeconomic white women. It's less common in African-American women, in Hispanic women, in Asian women. Why is that? . . . It may be that some people, when exposed to pesticides, have mutations that lead to cancer and other people don't. Maybe if you could figure it out, you could give the people who don't have it the protection they need.
Q: How much might early detection account for some of the increase in breast-cancer rates in recent years?
A: Some of the increase is detection, but not a lot. It should be a lot more. For example, among women over 50, where mammography works best, only about a third of them are getting mammograms.
A: One reason is a problem of the media. Every article about breast cancer, and every women's magazine or TV show, always shows the 22-year-old's body. They never show a 65-year-old's. Yet breast cancer is more common the older you are. It's very uncommon in 22-year-olds. But we just throw away older women. They don't count . . . .
I have these TV shows call and say, "We want to do a show and could you find us a 35-year-old with two young kids?" Because it's so heart-rending. But it's also heart-rending when you're 65 years old, thank you very much. So, part of it is that older women don't see themselves at risk. If you ask them why they don't get mammograms, they either say, "I'm not at risk" or "My doctor didn't tell me to."
Q: Women have been led to believe that if they did breast self-examination and had regular checkups and mammography from age 40 on, they could hope not to die of breast cancer. Now they're being told early detection is a myth, that mammography misses 10% or 15% of all tumors and that it's not cost-effective to spend society's money to make mammography available to women under 50. Can you advise them?
A: The problem is, we oversold it, in the true American fashion. We made it sound as if every cancer goes through this nice little progression from a grain of sand to a BB to a pea to a walnut to a lemon to a grapefruit. And if you just did your breast self-exam and you got your mammogram, you could find them all as this grain of sand and we'd all be cured and life would be groovy. It's just not that simple . . . . It doesn't necessarily go from a grain of sand or a BB--it may show up as a walnut . . . . And some cancers that are very sneaky don't show up until they're grapefruit . . . .
If you have dense breast tissue, cancer and breasts have the same density and you're not going to see a difference in density, which is what you're looking for with mammography. Young women have dense breasts and, therefore, mammography is less accurate in young women. It becomes more accurate once you go through the menopause. Then all breast tissue fades away and gets replaced by fat and cancer shows up against that great. So, mammography works great over 50. It's never really been proven to work well in women under 50 . . . . The answer is: We need to find something that works better, not pay for something that doesn't work that well.
Q: And in the meantime?
A: And in the meantime, the answer's political action.