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Advocacy Groups Ignore Breast Cancer Hot Spots

Editor's Note:This article is excerpted from the fall 2006 issue of Ms. magazine, available on newsstands now.

Living on the wild, craggy elbow of Cape Cod, Jane Chase feels lucky to have spent 50 years in a house facing Nantucket Sound. "We love it here," she says, looking out over a marsh at a spectacular sunset on Red River Beach.

It wasn't until a few years ago, when a community effort was launched to understand the strangely high rate of breast cancer on Cape Cod, that the mother of six considered her South Harwich, Mass., home to be anything other than a bucolic haven.

The two-time breast cancer survivor might never have linked her disease to the environment had she not joined a local cancer group and later enlisted in a household health study. She then learned that her classic colonial garrison house harbored lurking toxins, and that her idyllic neighborhood had likely been aerially sprayed with now-banned organochlorine pesticides such as DDT.

Cape Cod, with a breast cancer rate 20 percent higher than the rest of Massachusetts, is just one of a several places around the United States with the dubious distinction of being a "hot spot" on our nation's increasingly lit-up breast cancer map. It's joined by Long Island, Marin County and San Francisco -- places where a controversy has brewed for years -- and newly emerging areas such as the Puget Sound in Washington state and Brownsville, Texas.

A large cluster of elevated mortality rates for breast cancer, extending from the Mid-Atlantic through the Northeastern states, has "persisted for many years," says Deborah Winn of the National Cancer Institute (NCI). In the Northeast, rates are about 16 percent higher than the rest of the U.S. and in the smaller swatch from New York City to Philadelphia rates are 7 percent higher than the rest of the Northeast.

The reasons for variable rates of the disease are not well understood, according to Winn. But what is clear is that the discovery of hot spots have sparked a new breast-cancer environmental movement, with strong local advocacy groups as well as new national groups.

Long Island activists began drawing their own breast cancer maps in 1992, pinpointing neighbors' homes as if they were battlefield targets. As more hot spots were identified, each touched off a surge of interest. On Cape Cod, women "called on researchers, like ourselves, to begin studying the problem," says Julia Brody of Silent Spring Institute, in Newton, Mass. Long Island activists went to Congress for research funding to investigate possible environmental factors.

"They felt there was a bias in the scientific literature toward 'known risk factors' for the disease, and that these tend to reside with the personal [factors] -- like [use of] alcohol, tobacco and birth control," says Scott Carlin, a geographer at C.W. Post College. "And there's not an equally well-studied and known list of risk factors in the environmental spheres."

The first flurry of environmental studies proved inconclusive, but activists and scientists have not stopped pursuing the environmental questions. Far from it: Interest in environmental factors is growing, says Kevin Donegan of the Breast Cancer Fund (BCF), one of several national breast cancer advocacy groups that formed in the 1990s. "Our own polls show an overwhelming majority of people believe that pollution of various kinds is driving this disease," he says.

In 2006, some 270,000 U.S. women -- and men, too, since a small percentage are prone -- will learn that they have some form of breast cancer. The American Cancer Society predicts that, of those cases, more than 40,000 will die of the disease. Worldwide, an estimated 1.2 million people will be diagnosed with breast cancer this year, but women living in North America maintain the highest rate of the disease.

Breast cancer is what scientists call "multifactorial," in that a variety of genetic, environmental and lifestyle factors may play a role. The American Cancer Society attributes 5 to 10 percent of the risk of developing the disease on genetic predisposition. Another 25 to 30 percent of the risk has been linked to reproductive/hormonal factors, such as earlier age at menarche, later age of menopause, waiting longer to have children and having few (if any) children.

But these possible risk factors leave much unexplained. So researchers have also looked to diet, lifestyle (smoking, exercise, alcohol) and exposure to environmental toxins in the air, water and food. In the view of establishment groups such as the American Cancer Society and the NCI, however, the environment is an unlikely reason for the noticeable U.S. hot spots.

For many breast cancer activists, this lack of attention to the physical environment is frustrating. And certainly, Jane Chase, with her family of six kids and young age at motherhood, proves that having children early and often is no guarantee of being protected from breast cancer.

"They can continue to dismiss environmental factors, and harp on demographics, when frankly that's why we're in such a pickle," says Jeanne Rizzo, director of the BCF. "This generation is getting sicker rather than healthier, and we need to understand why."

Federal funding for breast cancer research since 1991 has totaled $6.8 billion, according to BCF's 2006 report, State of the Evidence, but only a small percentage of that has been directed toward studying environmental connections to the disease. Like other cancers, breast cancer has a long latency period -- typically 20 to 40 years -- and before it can be detected, people have moved, died or been exposed to other factors that promote or retard the disease.

Enter the mapmakers. An exciting new tool of epidemiological researchers is geographic information systems (GIS), a computer-aided system that makes it possible to integrate and display (most commonly as a map) geographically referenced information that is otherwise difficult to correlate.

"Geographic data can add another dimension to the mix," says Silent Spring's Brody, "because it can answer questions about the environment that women can't answer for themselves -- like whether their neighborhood was sprayed for Gypsy moths."

Back in Cape Cod, Jane Chase thinks about her nine grandchildren as she follows the results of studies looking into her local environment. "Instead of just focusing on treating and curing those who are unfortunately afflicted now," says Chase, "we need to learn about all of the factors that are triggering and promoting this disease so that we can prevent it from attacking future generations."