O, The Oprah Magazine | September 20, 2010
Susan Love, MD, has scientists rethinking the way breast cancer research should be conducted.
They are trotted out nearly as often as those pink ribbons, but the statistics on breast cancer still stun: This year an estimated 200,000 women will be diagnosed and 40,000 will die—three times the number who will die of ovarian cancer—and science still hasn’t unlocked the mysteries of this relentless killer.
Yet what if the problem isn’t the research itself but rather who (or what) is being researched? “Animal studies can take you only so far because, let’s face it—rats and women are pretty different,” says Susan Love, MD, a former breast surgeon and author of the best-seller Dr. Susan Love’s Breast Book. “If more researchers looked at real women, they might discover what makes their cancer tick.” The hitch: Finding human research subjects is much harder than rounding up rodents, and scientists often come up short.
Or they used to. In 2008 the Dr. Susan Love Research Foundation partnered with the Avon Foundation for Women to launch the Love/Avon Army of Women (AOW), an online initiative that has so far found more than 330,000 women willing to take part in breast cancer research. The group’s aim is twofold: to partner breast cancer scientists with study volunteers, and to shift the focus of research from treatment to prevention.
Love points to cervical cancer as an example of what can happen when researchers home in on finding the cause of a disease—and conduct their research on human subjects. “Thirty years ago, we were giving women hysterectomies after a single abnormal Pap smear,” she says. “Now not only do we know that most cervical cancer is caused by a virus, but my daughter has been vaccinated against it.”
Progress was made so quickly, Love says, in part because using mice just wasn’t practical: “Can you picture a mouse in tiny stirrups?” she says wryly.
Yet when Love pressed breast cancer scientists to follow the lead of cervical cancer researchers, some balked. “They would tell me, ‘Women are too messy. You can’t control what they eat, what they do.'” Others simply didn’t know how to find human subjects. Love’s response: “I’ll find them.”
And she did. Of the volunteers the AOW has recruited to date, 40,000 (most of whom have not had breast cancer) have participated in 31 studies.
For example, Kathleen F. Arcaro, PhD, is heading up a University of Massachusetts study to determine if certain cells in breast milk can reveal cancer risk. To do so, she compares these cells in women who’ve had normal breast biopsies to those of women who’ve had abnormal ones. Using traditional search methods—like displaying brochures in mammography centers—Arcaro got just over 40 participants. Once she turned to the AOW, that number more than quadrupled.
The group’s most ambitious project yet: providing subjects for a massive survey called the Health of Women study. Researchers hope to track one million women over 20 years, using online questionnaires to gather information about diet, exercise, alcohol intake—even the use of underwire bras and certain antiperspirants. “No one would have believed that ulcers were caused by a bacterial infection until physicians in Australia hit on the connection,” says Love. “So we need to look beyond the usual risk factors.”
That’s the simple idea behind the AOW—to get scientists to look beyond the usual. And other organizations are catching on to the group’s success: Both the Lance Armstrong Foundation and the Michael J. Fox Foundation have contacted the AOW about creating their own “armies” to encourage participation in cancer and Parkinson’s disease research. That means the scientific community may soon face a full-scale invasion—the kind we could use more of.