Health

Radical responses

Breast cancer activists challenge the traditional treatments

SHARON DOYLE DRIEDGER July 28 1997
Health

Radical responses

Breast cancer activists challenge the traditional treatments

SHARON DOYLE DRIEDGER July 28 1997

Radical responses

Breast cancer activists challenge the traditional treatments

SHARON DOYLE DRIEDGER

Health

Matuschka does breast cancer with attitude. Sporting a black baseball cap worn backwards, punk-style, over her short dark hair, the braless, single-breasted artist tugs at the hem of her clingy black minidress and tells how a misdiagnosis and a mastectomy at age 37 transformed her life. “I lost a breast,” she deadpans, “and the world gained an activist.” A former model, Matuschka angrily refused to hide her scars. Instead, she exposed her naked chest in a series of provocative photographs and other works of art, revealing the hard reality of breast cancer. “It gives me a kick to make art out of tragedy,” says the 43-year-old New Yorker, noting that her award-winning pieces—widely rejected at first—eventually

“metastasized into 17 magazine covers” (including Maclean’s on July 11,1994). Art can be therapeutic, she tells the women painting and pasting their collective outrage into a collage in a workshop at the extraordinary World Conference on Breast Cancer last week in Kingston, Ont. ‘You can take breast cancer and turn it around.”

The camaraderie that developed in Matuschka’s art session recurred in numerous gatherings over five days, as more than 650 breast cancer patients and supporters from more than 50 countries—almost all of them women—shared their worries, wounds and laughter. Clutching an eagle feather, 59year-old Eva Bereti, a First Nations woman from Edmonton, told how her “difficult journey” led to a traditional medicine man because of “racist” attitudes among the doctors who diagnosed her breast cancer 18 years ago. In a tender response, a Maori health worker from New Zealand rose spontaneously and, in her native language, sang a song of tribute to Bereti.

But the gathering revealed divisions, too, as the more militant participants lost patience with the attention paid to traditional approaches to cancer—what they derided as slash, burn and poison techniques. “Many of us are frustrated with all this medical stuff,” says environmental crusader Van MacDonald of Toronto. “Prevention and the links to pollution should be the priority.” Outspoken American activist Judy Brady bluntly told delegates: “I am sick of the overload of papers at this conference focusing on the fact that there is an epidemic of breast cancer without questioning why.”

No one disputed the tragic numbers and the need to take action. A Canadian woman’s chances of getting breast cancer in her lifetime have risen from one in 20 in 1960 to about one in eight. The worldwide incidence has jumped 26 per cent since 1980. Medical science can claim some progress—the mortality rate from the disease has declined, slightly, over the past two decades. Still, many delegates showed a bias for alternative medicine. Breast cancer fighters cheered when Francisco Contreras—a Mexican doctor who offers laetrile, shark cartilage and other nontraditional therapies in his Tijuana clinic—attacked the socalled cancer establishment. “Billions of dollars of support and the best scientific talent hasn’t paid off,” declared Contreras, who claims that 39 per cent of the 300 terminal patients on his program are still alive after five years. The main reason for that success, he adds, is that “we offer them hope.” When a Toronto oncologist questioned Contreras, asking whether his findings had been published in a reputable medical journal, he was loudly booed. Many women expressed frustration, disappointment and even anger at the often contradictory information supplied by conventional practitioners. “It is very confusing,” said Rosa Meneses, a 44-year-old Manila homemaker and one of many cancer patients who travelled long distances to seek help at the conference. “Nothing is sure.” After talking with several prominent doctors, she remained undecided about the best treatment for her “very bad” cancer. Others complained that some scientists failed to communicate at a layman’s level. “Most of the time they talked over my head,” said Adelene Gushue, a survivor from London, Ont.

To Jan Livingston, the message in a seminar on tamoxifen—a widely used breast cancer drug—was disheartening. “I am on tamoxifen because my cancer has spread through my body,” said the community college teacher from Orillia, Ont., “and they were cavalierly saying, ‘It carries a risk of getting endometrial cancer, so maybe you shouldn’t take it.’ I said, Well, what’s my other option?’ Nobody came up with anything.” One expert finally pointed out that, like chemotherapy and radiation, tamoxifen carries both risks and benefits. Still, Livingston, adds: “I was angry—it takes away our hope.”

The clear message about breast cancer is that there is no clear message, declared Californian surgeon Dr. Susan Love. “People get disappointed, but this is a work in progress.” Still, she notes that important “new pieces of the puzzle” are emerging. Researchers, for instance, are investigating a subtler form of chemotherapy that “rehabilitates” cancer cells—an improvement over the old shotgun approach that killed cancerous and healthy tissue. But what can women do for prevention now? “Exercise three times a week—that has been shown to decrease breast cancer,” Love advises. “Eat soy and try not to use toxic chemicals.” Some doctors fear that the apparent lack of progress may lead some patients to abandon standard treatments. Dr. Annie Sasco, of the International Agency for Research on Cancer in Lyon, France, expressed her frustration at delegates who proposed a ban on chemotherapy and radiation. Although she acknowledged that the treatments should be applied judiciously, she added that, “in breast cancer, chemotherapy has been shown to be associated with longer survival and fewer recurrences.” Environmental activists are finding support from the scientific community for their claims that dramatic increases in breast cancer rates are linked to the hundreds of pollutants—from pesticides, herbicides and other industrial sources—that are contaminating the planet. More than 70 per cent of breast cancer cases cannot be explained by genetics or other established risk factors. “There are reams of evidence linking breast cancer and more than 400 compounds, including benzene, and red dye number 3,” says Washington toxicologist and activist Dr. Devra Lee Davis. “Some say the evidence is inconsistent and incomplete, and they are right. But we can’t afford to wait because science will always be uncertain. We waited too long to take action on smoking.” Boston biologist and poet Sandra Steingraber agrees. “People don’t have to die to keep weeds out of farmers’ fields,” says the author of Living Downstream, a moving account of the damaged environment in which she contracted cancer. “This a doable project—we did get rid of DDT and we did get the lead out of gas.”

Outraged activists are ready to fight the industrial Goliaths that produce and use cancercausing pollutants. ‘We are not well organized, we are not well funded and many of us are not well,” Montreal activist Sharon Batt told the conference. “But we are not alone.” Bella Abzug, a former U.S. congresswoman from New York and head of the Women’s Environment and Development Organization, is joining forces with Canadian activists to create a “global action plan” for presentation to the United Nations. “Our job,” Abzug told delegates, “is to do for breast cancer what happened to AIDS in the 1980s— to put breast cancer on the centre stage.”

On the final day, an exhausted Janet Collins rests on the steps outside the church where more than 300 delegates sat through the closing ceremony in sweltering humidity. “The spirit was amazing,” says the 56-year-old former nurse from Kingston who conceived the idea for the conference three years ago and stubbornly kept the vision alive. ‘We’ve got something going here that is not going to go away.” Deena Apel, a retired teacher from Waterloo, Ont., left with the motivation to eliminate the toxins in her home and, as far as possible, her neighborhood. The trouble is, like many people, she doesn’t know what they are. We need lists,” says Apel. So, it seems, do the well-intentioned organizers. Delegates took home a tote bag made of polyvinyl chloride, yet another environmental suspect. □