A Lab of Their Own
In Massachusetts, some women health activists don't like the way other scientists are researching breast cancer. So they're doing it themselves.
By Tinker Ready
DECEMBER 7, 1998: All day long, apprehensive women descend to the cramped basement office of the Breast Evaluation Center, in Hyannis, to get their mammograms. Each woman leans into the scanner as a technician places her breast between two plastic plates. A few beeps of the x-ray, a few shots at different angles, and it's done. The women leave, hoping the film comes back with no sign of a tumor. But the odds of that are worse here than almost anywhere else in Massachusetts. For some reason, women on Cape Cod have been developing breast cancer at unusually high rates -- according to one study, 21 percent higher than the state average, and in some towns up to 55 percent higher. (Statewide, 117 out of every 100,000 women developed breast cancer in 1992, the most recent year for which numbers are available.) No one knows why this is happening on the Cape, and no one knows how to reduce the rate. So the women trek to this basement and put their trust in early detection, hoping the x-rays come up clear -- and if there's a tumor, hoping they've discovered it before it becomes deadly.
"The bottom line is, there is no such thing as early detection," says Osimo, a breast cancer activist who works just down the street from the clinic. "By the time they find that lump, it's been there for eight or ten years. . . . When people talk to me about early detection, I say 'bullshit.' "
Those are tough words at a time when mammography is akin to a sacrament among the growing ranks of breast cancer activists. But when Osimo says "not good enough," she means that mammograms -- and new drugs, and state-of-the-art surgery -- are only part of the battle against breast cancer. Osimo handles community relations at the Cape Cod satellite office of the Silent Spring Institute, a group of scientists who decided that if they wanted breast cancer research to focus on prevention instead of just detection and treatment, they would have to do it themselves.
From its inception in 1994, the institute has been unusual. Led by female scientists and armed with approximately $8 million in state funding -- the largest grant Massachusetts has ever made for an environmental study -- the group is putting a hotly debated theory to the test. It's trying to find out if a certain class of chemicals that act like hormones -- some found in laundry soap, common pesticides, and everyday plastics -- may cause or trigger breast cancer. And Cape Cod, with its history of pesticide use, its heavy reliance on ground water, and its elevated cancer rates, is an ideal lab for this work.
Over the past four years, the institute's researchers have created a detailed map showing where and when the Cape was sprayed with pesticides. Now they're about to launch the critical phase of their study: they plan to compile chemical-exposure histories for 2500 women on the Cape, half with breast cancer and half cancer-free. Then they will put all the pieces together and see whether a pattern emerges.
"I think it's our best chance of finding out what's going on on Cape Cod," says Susan Condon, director of the state's Bureau of Environmental Health Assessment.
Chance is the key word. The task these women have taken on is scientifically daunting. Even with a monumental stack of data, drawing a line from a lifetime of chemical encounters to a single disease is a complicated and precarious endeavor. The most meticulously designed study may still fail to account for factors that will skew the results. And the very premise of their search may be faulty: several studies have already failed to confirm the link between one hormone-mimicking chemical -- the pesticide DDT -- and breast cancer. (Outlawed in the 1970s, DDT is still present in trace amounts in the air and water.) The Silent Spring scientists may be spending the state's millions just to find that they've been chasing a bankrupt theory.
But if they're right, these researchers may pin down one of the reasons why US breast cancer rates have soared over the past 50 years. And they'll be able to take credit for identifying a danger to women's health that could someday be reduced. It's not clear yet whether these scientists are unusually bold, or unusually misguided, or both. One thing is certain, though: this is not science as usual.
No sugarcoatingA generation ago, women still talked about breast cancer in whispers. Today, the fight against the disease has turned suburban housewives into crusaders. Breast cancer now has its own road races, commemorative postage stamps, and pink-ribbon lapel pins.
Cheryl Osimo has little use for pink ribbons. "I don't like to see this disease sugarcoated," she says. "I don't want people to say, 'I've had my mammogram, I'm okay.' . . . Then we'll never do the research. We'll never find the cause."
Osimo hastens to add that she "absolutely" believes women should have regular mammograms. She simply believes that the scan fails to find cancer early enough. The bulletin board in her Hyannis office is crowded with snapshots of women who discovered their cancer during mammograms or self-exams. None of them is still alive. About 40,000 US women die from the disease each year, and Osimo, a whirlwind of a woman with a mane of curly brown hair, thought she was going to be one of them.
In 1991, a lump under her arm put fear in her heart and the term infiltrating ductal carcinoma into her vocabulary. A mammogram eight months earlier had revealed no sign of cancer, she says. The former teacher and daycare operator suffered through six months of chemotherapy, wondering whether she would live to raise her two children. She also wondered why science couldn't offer something better -- namely, some information on what causes the disease and how to prevent it.
Then, in 1993, the state cancer registry released six years' worth of data showing abnormally high breast cancer rates on Cape Cod. By then Osimo was involved with a group of veteran women's health activists who had formed the Massachusetts Breast Cancer Coalition. They, too, spurn the pastel shade of the breast cancer ribbons; instead, they use bright fuchsia on their T-shirts, bumper stickers, and newsletters.
The coalition -- whose members had experience fighting on behalf of abortion rights, legal midwifery, and battered women -- persuaded the state legislature to make funds available for a study of breast cancer and the environment on Cape Cod. The scientists in the coalition then formed a research group, taking their name from the book that launched the modern environmental movement in 1962 -- and whose author, Rachel Carson, died of breast cancer two years after the book was published. In 1994, the Silent Spring Institute put in a bid for the state contract and won it.
Marching scientistsIn the big-money, big-science, big-ego world of medical research, the Silent Spring Institute stands out. Four of the five lead scientists are women. Based in a generic Newton office building, the institute is unaffiliated with any medical school or university lab. That makes it the country's only independent, nonacademic research team looking into breast cancer and the environment.
"Independent" means these scientists don't have to tailor their work to meet the expectations of department heads, federal grant makers, or corporate sponsors. It also means -- despite that $7 million of state money -- that they're not in line for a dime of the $164 million in federal health-research funds expected to flow into the state next year. Federal money usually goes straight to university labs, most of which make a point of staying apolitical, in part to ensure that accusations of bias don't threaten their funding.
The staff members at Silent Spring are anything but apolitical. They openly call themselves activists as well as scientists. They march in rallies with a banner bearing the institute's logo, hold public meetings on the Cape to talk about their work, and post their results on library bulletin boards. They refer to their research as an "open process" and hold focus groups to seek input from community organizations, local doctors, and cancer patients. And they've started their own research fund, knowing the state grant won't last forever. They don't have a university budget to fall back on, and they don't think they'll get much support from the National Cancer Institute, the federal agency that funds most cancer research in this country. Julia Brody, the executive director of the Silent Spring Institute, says the NCI is "overwhelmingly focused on diagnosis and treatment. Activists really want to look at preventable causes."
Brody is a petite, well-spoken woman who is nursing a cold as she sits in the group's conference room and talks about its work. She describes how they've put together a core research team drawn from a range of disciplines so they can go at the Cape cancer puzzle piece by piece. They also work with about 20 other collaborating scientists at Tufts, Harvard, and Boston University. Brody herself has one foot in the policy world and one foot in science: her PhD is in psychology, but she earned it in an unusual program that focused on community and environmental issues.
She also has a theory about why it took so long for anyone to begin looking at environmental links to breast cancer.
"There are drug companies that make money off of chemotherapy and they study chemotherapy," she says. "There are companies that make money off of mammography and they study mammography. There is nobody out there ready to make a profit on finding the environmental causes of breast cancer."
In addition to Brody, the institute's staff includes Nancy Irwin Maxwell, an epidemiologist who analyzes disease trends in the population, and Steven Melly, an analytical chemist who doubles as the resident expert in Geographic Information Systems, the computer mapping program vital to the group's work.
In his book Cancer War: What We Know and Don't Know About Cancer, Pennsylvania State University professor Robert Proctor points out that researchers have operated on the assumption that science would produce a cure for cancer. That focus set a scientific agenda revolving around such questions as how cancer cells begin to grow and why the body's immune system fails to stop them. By taking their cues from patients and their advocates, Proctor says, the Silent Spring researchers can ask different kinds of questions.
"I think it's extremely important work," he says. "This group for the first time is combining activism and prevention-oriented research. You don't see that very often."
That's what drew environmental toxicologist Ruthann Rudel to the project. Rudel had a conventional research-lab career, but she abandoned it when she found the work interesting but irrelevant. (She compares it to a "complex game of chess -- compelling but narrowly focused.")
She went back to school, joined the staff of a Cambridge environmental consulting firm, and found herself doing research for corporations trying to find ways to cut the cost of complying with environmental regulations. All the while, she noticed that advocates such as Greenpeace and the Natural Resources Defense Council were virtually absent from the research and policy world.
"Given how crowded the environmental field is with corporate-sponsored research," says Rudel, "I think that there is a desperate need for some balance. As a society, we need to support more government- and independently funded research organizations who are in a position to ask the questions that have gone unasked and unanswered for too long."
Nailing down the culpritThe biggest unanswered question is: do chemicals that act like hormones harm human health?
After three years of intensive investigation, Silent Spring researchers concluded that women on the Cape are no older than and no more likely to get mammograms than other American women. They also ruled out family history, smoking, alcohol consumption, and childbearing history as factors that might be inflating the Cape's cancer rates.
Then they began looking at some suspected environmental causes. According to a report they published in 1997, they failed to find higher cancer rates among women who lived near power lines or near the Pilgrim nuclear power plant in Plymouth. And they found only weak evidence of higher breast cancer rates near the contaminated sites at the Massachusetts Military Reservation. So they were able to narrow their focus to chemicals that act like hormones.
It is a well-established scientific fact that a woman's risk of breast cancer is directly related to her lifetime exposure to the hormone estrogen. For example, women who begin menstruating at an early age and women who take hormone-replacement therapy after menopause face a higher risk of the disease. That's why childbearing reduces the risk of breast cancer and alcohol consumption increases it: both alter the body's estrogen levels.
So it follows, says Brody, that a class of hormone-like chemicals may play a role in breast cancer. Known as "environmental estrogens" or "endocrine disruptors," these chemicals interfere with the body's hormone-regulating endocrine system, and they were the subject of some interesting findings around the time the Silent Spring study began.
A small study conducted in New York in 1993 found a link between breast cancer and DDT. The study found that women whose blood had higher levels of DDE -- a byproduct of DDT that remains in the body years after exposure -- were more likely to get breast cancer than women with lower DDE levels.
As researchers began to follow up on that work, the issue took off -- for a while. A study by researchers at Tulane University found that even chemicals with only a weak impact on hormones became much more powerful when combined with similar chemicals. The 1996 book Our Stolen Future, by Theo Colborn, Dianne Dumanoski, and John Peterson Myers, linked estrogen mimics in animals with sexual mutations, declining fertility, and stunted growth.
But as quickly as environmental estrogens emerged as the next great threat to health, the science behind the theory appeared to begin unraveling. Critics argued that threats to animal health don't necessarily mean threats to human health. They pointed out that natural estrogens in foods such as soybeans don't cause problems and may actually protect against breast cancer. The author of the Tulane report had to withdraw his study: after several scientists failed to confirm his results, he went back and found errors in his work. In the meantime, study after study failed to confirm the original New York research that had linked breast cancer and DDT.
Two years ago, the EPA, the Centers for Disease Control and Prevention, and the Department of Interior asked the National Research Institute to convene a panel of experts to review the literature on hormone mimics in the environment. The report was due this past September, but the panel, unable to come up with a consensus, postponed its release until early next year.
In short, the science is a lot murkier than when the Silent Spring Institute began its work.
But none of this has convinced Silent Spring that its research is not worth pursuing. DDT is only one of hundreds of chemicals that may mimic estrogen, says Brody; the EPA is currently testing 15,000 substances to find out whether they interact with the body's hormones. And in addition to total exposure, timing may play a role, she says: for example, the chemicals might be more toxic if exposure occurs during puberty or pregnancy.
For researchers, this is tricky territory. It's one thing to establish links between, say, lung cancer and asbestos -- when you can look at a group of factory workers who handled the substance every day for 20 years, it's relatively easy to establish how much asbestos they've been exposed to. It's much harder to draw a line from breast cancer to a lifetime of exposure to household detergents, mosquito-control trucks, cranberry-bog spraying, plastic-lined tin cans, and public drinking water.
By charting every bit of information they can find on chemical use and pinpointing actual breast cancer cases, the Silent Spring researchers hope to expose the telltale patterns signaling the link between exposure and disease.
Into the orange zoneGo one way at the fork of Pine and Grove Streets, in Sandwich, and you'll drive through a quiet, wooded Cape neighborhood surrounded by a thick state forest. If you go the other way, you'll see the green lawns of the Heritage Plantation, a peaceful old estate that now houses a carousel and an antique-car museum.
If you look at the same neighborhood on the Silent Spring Institute's computerized map, you'll see a different picture. A wide orange band marks an area where the state sprayed gypsy-moth infestations with DDT in 1956. The orange stripes just south of the band mark a portion of the 22,000 acres sprayed in 1965 with Sevin, another common pesticide used to control gypsy moths and brown-tailed moths. And a set of black stripes within the orange-band mark where, in 1986, the state sprayed Sevin over about 500 acres, including Heritage Plantation.
Silent Spring has found that between 1948 and 1992, government agencies conducted this type of large-scale pesticide spraying on the Cape 88 times. Researchers have also identified smaller pesticide users, including farmers, cranberry growers, and golf-course operators. They're still piecing together information on mosquito spraying and chemicals used on private lawns and gardens.
Meanwhile, the researchers have mapped the homes of 2625 women diagnosed with breast cancer between 1982 and 1994. The families living in the homes are unlikely to know what chemicals may have drifted into their yards and through their windows over the years, so the computer is now programmed to fill in some of the blanks. It can calculate how far each house is from pesticide-use areas, and whether those pesticides drifted over rooftops or were blocked by trees or other barriers.
Another piece of the study looks at chemicals in Cape water. Using a test developed at Tufts, the scientists treated breast cancer cells with both waste and drinking water from the Cape. Because breast cancer cells grow rapidly when exposed to estrogen, the scientists believe the reaction of cells can identify the presence of unidentified estrogen-like chemicals in the water. They found evidence of only trace levels of these chemicals in the drinking water but much higher levels in waste water, leading to a theory that the problem may lie not with pesticides (which would have leached into the drinking-water supply) but with common household chemicals. Soon the researchers will start looking for traces of those chemicals by testing the air and dust inside 140 homes.
And when they're done, they still may find no connection between chemicals and breast cancer. That won't mean it's not there, says Brody. It may just mean that they haven't pinned it down yet.
"It's entirely possible that there could be a link and we won't find it," she says. "There is a lot of work to be done. . . . There are many different ways you can measure exposure, and we don't know which is going to work best."
Paparazzi science?It may also be that the link isn't there. Barbara Hulka, a breast cancer researcher at the University of North Carolina at Chapel Hill, thinks the cause of breast cancer is more likely to be found in the human body than in the environment.
But "people don't want to hear that," she says. "Part of why this endocrine-disruptor hypothesis has caught the imagination of a lot of people is that we would all like to find something outside of us to blame and also to eliminate."
Except for the initial New York study of DDT, the only studies that have looked at known estrogen mimics in humans -- DDT and PCBs, another banned chemical -- have failed to come up with a link, she says.
"There have now been multiple studies, and they've been good studies, and they do not support an association between DDT or PCBs and the risk of breast cancer," Hulka says. "How much energy do you want to devote to what has been pretty reasonably evaluated?"
The most frequently cited study came out of Harvard last year. Researchers there tested blood from 500 women for traces of DDE and PCBs. They found that the levels were the same for women with breast cancer and those without. An editorial accompanying the story in the New England Journal of Medicine cast the study as the last word on the issue and warned against "chemophobia" and "paparazzi science." Much of the media coverage of the study took the same angle.
Still, the science behind estrogen mimics is still in its infancy. Ann Aschengrau, an epidemiologist at Boston University who is working with Silent Spring researchers, says it will take many years and many studies before the question is settled.
"There are many more studies in the pipeline that look at different organochlorines and breast cancer," she says. (Organochlorines are the class of chemicals that includes DDT.) "The media emphasizes the very last one and says that's the answer. There may be reasons why one study shows an association and another doesn't."
Among those other studies is a project now under way on Long Island, where women also registered unusually high breast cancer rates. Researchers from Columbia University, with funding from the National Institutes of Health, are looking at the role both environment and genetics play in the disease.
The bottom line, says Julia Brody, is that there are still good reasons to continue this work on the Cape.
"We know that breast cancer rates have been elevated on the Cape for a long time," she says. "We know that the established risk factors don't explain it. What we don't know are the effects of exposure to these compounds." And if anyone is wondering whether their work is biased, naive, or simply sloppy, she invites them to take a look at some of the journal articles they're beginning to publish. Last year, Environmental Science and Technology published an article on their experimental water test, and Environmental Health Perspectives published a paper by Ruthann Rudel on the mechanics of predicting how estrogen-mimic exposure affects health. "We're at the point now where our work is beginning to speak for itself," Brody says.
Susan Condon, the Bureau of Environmental Health Assessment director, is well aware of the studies that failed to link DDT and breast cancer and agrees that the question is far from closed. In addition to funding the Silent Spring Institute, the state is conducting its own study of DDT and breast cancer in the Berkshires. Condon says that work is designed to address what she believes are flaws in last year's Harvard study.
"To say you've ruled something out when you haven't really tested the hypothesis is a very dangerous road to go down," she says. "I think a lot of people are looking at the work we're doing together and waiting to see what we come up with."
Tinker Ready, a freelance science writer living in Cambridge, can be reached at firstname.lastname@example.org.
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