Breast Cancer Survivors on a Crusade

On her regular hikes along the rugged Marin County coast, Fern Orenstein considers the roiling Pacific and ponders a troubling reality: In this lush and health-conscious corner of California, too many of her friends are falling prey to breast cancer.

“How could such a beautiful place be associated with so much death?” she asks.

In a 1999 study by the National Cancer Institute, breast cancer death rates in Marin were among the highest 10% of counties in the nation. The rate is also among the highest in California, according to the Northern California Cancer Center.

Those figures are not necessarily a surprise. Breast cancer rates rise with age, and Marin County’s residents are substantially older than average. Rates of the disease are also higher among women who have never had children or who had their first child late in life--characteristics often found in women living in this collection of affluent suburbs.

But for many women, those statistical explanations for the disease do not suffice. Some find them deeply frustrating.

“We’ve got to take a close look at our environment,” Orenstein said. “For all those scientists who have written off the idea of a cancer cluster, I say, ‘You go tell that to a community where six women in a three-block area have come down with the disease.’”

Over the last six years, Orenstein, 43, and several other Marin breast cancer survivors have waged a crusade to track what they see as a medical mystery.

Like residents of Love Canal a generation ago--and women in similar locales with high cancer rates, such as New York City’s Long Island suburbs--these women suspect their community suffers from serious environmental problems. But no one, from their doctors to local medical researchers, has been able to explain it to their satisfaction.

With no scientific backgrounds, working from their kitchens and living rooms, they formed a nonprofit group that has taken part in several ambitious cancer studies, sought and received continued academic research support and worked to raise awareness about the disease in local and state politics.

For the 11 board members of the Marin Breast Cancer Watch, their push for answers has taken on a fresh edge: Two of the group’s original five members, including founder Francine Levien, died of breast cancer last year.

“We see ourselves as these Nancy Drews, desperately tracking down every possible clue to find out what is happening,” said Roni Peskin Mentzer, group president.

In 1992, Mentzer was diagnosed with cancer. It was the year she became engaged.

“I was shocked,” said the 56-year-old furniture designer. “I had regular mammograms, routine checkups. Suddenly, I had breast cancer, enduring a lumpectomy, radiation and chemotherapy.”

Even then, the thought of becoming a cancer activist was the furthest thing from her mind: “The only group I’d ever joined was the local Rotary Club.”

After her recovery, she and Orenstein joined with other local cancer survivors--including a physical therapist, a doctor and a saleswoman--who wanted to learn more about the situation in Marin.

First, they approached local hospitals about conducting a study of Marin, but were told they needed to enlist an epidemiologist to oversee their research and make sure they adhered to scientific methods. After months of rejection by other experts, they met Margaret Wrensch, an epidemiologist at the UC San Francisco School of Medicine, who agreed to help.

They began combing the medical literature on breast cancer and met with Wrensch to discuss their findings in what Orenstein calls “Epidemiology 101” classes.

Mentzer attended a world breast cancer conference in Toronto. Other group members sponsored speeches and other events to raise money to hire a support staff. They applied for grants.

“I thought this was going to be a one-time thing, that they’d say, ‘Oh, this is too hard. We can’t do this,’” recalls Wrensch, who was paid a stipend from grant money that the group received. “Here were these women who would not become intimidated. They were all affected by this disease and they wanted to understand it.”

The group focused on what it saw as a gap in breast cancer research: whether a woman’s adolescent experiences influenced her risk later in life.

With a $500,000 grant from UC Berkeley, they launched a study to compare the teenage experiences of 300 Marin County breast cancer patients with 300 local women without the disease.

Members helped design a questionnaire to assist study participants in recalling long-forgotten elements of their childhoods. They soon plan to release the first data from the three-year study, which examined family and social connections, along with physical health factors such as smoking, drinking and diet.

Working with a research collaborative involving local universities and laboratories, they also focused on a question that baffles many local women: Is there something in Marin’s soil, air or water causing the disease?

Group members are helping design a database to track local carcinogens. Working on tips from other residents, they’re investigating whether World War II munitions were buried at local landfills. They’ve researched submerged containers of radioactive materials sunk off the coast, and hope to look at emissions from oil refineries across San Francisco Bay.

Dr. Bobbie Head sees three to five new breast cancer patients each week at her Marin County practice, and agrees that it makes sense to investigate such possible causes as diet and childhood medical history. But she does not believe the county suffers from a particular environmental problem. “I live here and I have a daughter,” she said. “If I thought it was that dangerous, I’d leave.”

Experts say alcohol consumption, early puberty, late age at first full-term pregnancy and late menopause are among the known risk factors for breast cancer. Still, those factors are found in fewer than 50% of women diagnosed with the disease, according to another recent National Cancer Institute study.

Members of Marin Breast Cancer Watch and the San Francisco-based Breast Cancer Fund recently testified at a legislative hearing in Sacramento to examine the connection between chemicals and breast cancer.

Jeanne Rizzo, executive director of the Breast Cancer Fund, says Marin Breast Cancer Watch and its community-based research could one day be a national model. “They are a serious group, and we have funded some of their studies,” she said.

“They’re uncovering information that will be useful well beyond Marin County. Not only that, they’re showing the rest of the nation that everyday women can get involved in solving a problem, adding community data that will bring a more informed result.”

Mentzer’s search for answers has allowed her to turn the tables on a disease that almost killed her. “When I was in chemotherapy, I always saw my cancer as this serial killer who lurked behind every tree, playing havoc with my life,” she said. “But since I’ve become an activist, I’m now stalking the stalker. And that in itself is a victory.”