The Whispering Is Over

At first women were too embarrassed to talk about breast cancer. Then they started demanding research into treatment. Today, women are mobilizing, insisting that the causes of this epidemic be addressed
cancer survivor
"It's still me living with Breast Cancer," a self-portrait by Francoise & Denny Hultzapple. (c) 1998 Art.Rage.Us., The Art & Outrage of Breast Cancer, a program of the Breast Cancer Fund. 1-866-760-TBCF

Looking at the history of breast cancer politics, you might think women are slow learners. But when I was growing up, back in the 1940s, you couldn't say “breast” in mixed company, much less “breast cancer.” Incidence rates rose steadily after World War II, but who knew? Breast cancer was personal, and frankly, embarrassing, not to mention deadly. So you whispered about breast cancer. 

As scientist Rachel Carson was writing Silent Spring in the early 1960s, warning about the dangers of pesticides, she concealed her own metastatic breast cancer from all but her closest friends. Carson died of breast cancer in 1964, less than two years after her book's publication.

Then in the 1970s, Betty Ford, Happy Rockefeller, and Shirley Temple went public about their breast cancer, and thousands of women rushed to have mammograms. There the action stopped—until the late 1980s, when the AIDS community offered an indelible lesson in the politics of disease. In San Francisco, Elenore Pred paid attention to the outrage and the advocacy of AIDS groups. Recurrent breast cancer had invaded her bones, and after two close friends died of breast cancer in quick succession, Elenore got angry. She was no stranger to politics, having campaigned for civil rights and women's rights and against the Vietnam War. In the summer of 1990, she and 11 other women with metastatic breast cancer founded San Francisco's Breast Cancer Action (BCA).

Elenore wrote letters and made phone calls to Washington and Sacramento, made speeches, raised funds, and inspired others to join her in these efforts. “We must stop treating this disease as a personal tragedy,” Elenore told audiences. By Mother's Day, 1991, BCA and other breast cancer organizations rallied 1,000 people in Sacramento, demanding more research funding and more emphasis on prevention.

Elenore Pred was only one of many angry breast cancer activists. In other cities, breast cancer support groups morphed into advocacy organizations: The Women's Cancer Resource Center in Berkeley, The Women's Community Cancer Project in Cambridge, and the Mary Helen Mautner Projects for Lesbians with Cancer in Washington, DC. Elenore and her counterparts from across the country visited both the National Cancer Institute and Congress in 1991 and asked hard questions of policy makers: Why had breast cancer reached epidemic proportions? Why were so many women dying? Why were women being treated with the same harsh regimens their mothers endured?

Later that year, these groups, along with other national and local organizations formed the National Breast Cancer Coalition (NBCC). Within a decade, NBCC's efforts boosted federal breast cancer research funding nearly tenfold—from $90 million in 1991 to more than $800 million in 2001.

The whispering was over. Breast cancer moved out of the closet and onto the front page of The New York Times and into the network news.

In January 1991, breast cancer also moved into my life. Like many women newly diagnosed, I didn't know much about breast cancer. When the surgeon said, “It's not good news—but you have an excellent chance for cure,” I didn't know the difference between a statistical cure (living five years after diagnosis) and a real cure (living a long time and dying of something else). I didn't know that breast cancer was an epidemic, striking more than 170,000 women each year in the US and killing more than 40,000 of them. I didn't know about the political influence of corporations on what we know about breast cancer and other cancers. In the surgeon's waiting room, I read about advocacy groups and was drawn into this movement.

Early advocacy efforts focused primarily on treatment. Women diagnosed with breast cancer wanted information on treatment and they wanted support. Urgent and genuine, these needs largely eclipsed the importance of prevention issues, such as finding the causes of breast cancer.

In 1992, after two mastectomies, political consultant Andrea Martin started The Breast Cancer Fund (TBCF) in San Francisco, which challenged the status quo, questioning the conventional wisdom that mammography would solve the breast cancer crisis, pointing out that detection does not equal prevention and exposes women to ionizing radiation, the only proven cause of breast cancer.

In 1994, TBCF broke the news that the San Francisco Bay Area had the highest rates of breast cancer in the world—and dared to ask why. Were the high rates linked to environmental toxins?

Allie Light and Irving Saraf raised similar questions when their 39-year-old daughter was diagnosed with breast cancer that year. The San Francisco filmmakers wanted to know why so many young women were developing breast cancer, primarily a disease of older women.

“We knew nothing about breast cancer,” Allie said, “but we went with her for many second opinions, tape-recorded all office visits, studied her pathology reports and saved every scrap of information.” That was the beginning of Rachel's Daughters: Searching for the Causes of Breast Cancer. In this documentary, eight women with breast cancer interview scientists about their research into the known and suspected causes of breast cancer, including radiation exposure, pesticides, and synthetic estrogens. I served as co-producer of the film, which premiered on HBO in October 1997. Four years have passed since the premiere of Rachel's Daughters, but its scientific content remains accurate and compelling.

Fast forward to 2002 and you can see the handiwork of Elenore Pred, Andrea Martin, and other breast cancer pioneers. Federal research funding is up. Three major new drugs for breast cancer have been approved by the FDA since 1991—Taxol, Herceptin, and Arimidex. More low-income women have access to treatment, thanks to the Breast and Cervical Treatment Act of 2000. The Women's Health Initiative study confirmed that use of hormone replacement therapy for more than four years not only increased the risk of breast cancer, but also the risk of heart disease, stroke, and blood clots.

These tiny islands of progress bob in a sea of pink ribbons and corporate hype. Promotion for Breast Cancer Awareness Month (underwritten by Astra-Zeneca, the maker of breast cancer drug, Tamoxifen) focuses only on mammography, avoiding any mention of pesticides (which the company manufactured until a recent reorganization) or buying organic. Other campaigns invite you to Race For The Cure, Drive For The Cure (!!), and Shop For The Cure. Meanwhile, breast cancer rates continue to rise. The American Cancer Society estimated that the number of new breast cancer cases would hit 205,000 in 2002 and 40,000 would die from the disease. Of the billions of research dollars invested in breast cancer since 1971, less than 3 percent has been spent exploring environmental links. As Belle Shayer, co-founder of Breast Cancer Action, explained: “We haven't been able to get support for finding causes of breast cancer—or any cancer, for that matter. Congress and the drug companies don't see the need for prevention.”

Despite the paucity of research on environmental carcinogens, two things are clear: 1) ionizing radiation (for example, in medical x-rays) is the only proven cause of breast cancer, which makes it essential to replace mammography as a detection method, and 2) considerable scientific evidence links breast cancer to the proliferation of synthetic chemicals since World War II. In February 2002, The Breast Cancer Fund and Breast Cancer Action released a white paper summarizing this evidence: State of the Evidence: What Is the Connection Between Chemicals and Breast Cancer?

Meanwhile, pollution has become personal. Biomonitoring studies (chemical analysis of body fluids) show that all of us carry a body burden of toxic chemicals. Rachel Carson described this toxic invasion 40 years ago in Silent Spring. More than 200 contaminants have been found in breast milk. Breast milk holds valuable information about human exposure to toxic chemicals, some of which may contribute to breast cancer, but unlike European countries, the US has no systematic program to monitor breast milk. TBCF is working to change that.

At an International Summit on Breast Cancer and the Environment held in Santa Cruz, California, in May 2002, more than 100 scientists, activists, and community representatives gathered to create a new approach to breast cancer research and public policy. The top policy recommendation from the summit mirrored TBCF's own priority: establishing a national biomonitoring program that includes breast milk as a marker of community health. Two California legislators have pledged to introduce legislation establishing a pilot breast milk monitoring program in the state.

The existing evidence linking chemicals and breast cancer demands that we begin to implement the Precautionary Principle in shaping public policy. This principle says that evidence of harm rather than proof of harm should be the trigger for action. Thanks to the Breast Cancer Fund and other organizations, in March 2003, San Francisco supervisors will vote on the first Precautionary Principle ordinance in the nation to guide government purchases over $50,000.

Rachel Carson was right: our health and the health of the environment are inextricably linked. More than 85,000 synthetic chemicals have invaded our air, food, water, and ourselves. The lifetime risk of breast cancer is 1 in 8. The lifetime risk of some kind of cancer in the US is 1 in 3 for women and 1 in 2 for men. And cancer is a symptom of a larger epidemic of chronic disease that a growing body of research is linking with environmental deterioration. Research on the link between workplace exposures, household exposures, and breast milk contamination must continue, but we must also take precautionary action, based on existing evidence. We need to:

  • Phase out chemicals that cause cancer
  • Enact “sunshine” laws and enforce existing environmental protection laws to reduce the use of toxics
  • Practice healthy purchasing, with local, state, and federal goverments setting the example by purchasing environmentally preferable products
  • Offer incentives to encourage businesses to eliminate the use of harmful chemicals in products and processes.

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