Making Women Partners in Breast Cancer Research

Dr. Susan Love thinks breast cancer researchers need to get over their addiction to rodents.

America’s most famous breast cancer surgeon started treating women some 30 years ago. “And we’re still doing the same thing we did when I started,” she told a crowd in San Francisco last month at the Sage Bionetworks conference, aimed at transforming biomedical research.

“Surgery radiation, chemotherapy, hormones, and now we’ve added a little bit of targeted therapies,” said Love, a clinical professor of surgery at UCLA. “We never subtract anything, mind you, we only add things on top. And our results are about the same.”

Although breast cancer incidence and mortality have decreased since 1998, by 1.3% and 2% respectively, more than 200,000 women will be diagnosed with breast cancer this year and more than 40,000 will die from it. Nearly 110 women die from breast cancer every day.

Experts think earlier detection and better treatments account for the decline in deaths, but screening carries risks. With mass screening comes overdiagnosis—that is, diagnosing a condition that would not prove symptomatic or fatal—and with overdiagnosis comes overtreatment and other potential harms (see video below). Screening technology can’t distinguish between aggressive and harmless tumors, which can shrink or even disappear on their own. Overdiagnosis will likely just increase as imaging technology finds smaller and smaller tumors.

Medical experts acknowledged in an editorial in the Annals of Internal Medicine last month that it’s time to recognize overdiagnosis as a serious problem. Most patient-education materials don’t even mention overdiagnosis and most women aren’t aware of the possibility, the authors said. As they pointed out, and any woman knows, “the impact of a cancer diagnosis lasts a lifetime.”

It’s hard to think of a physician who’s done more to acknowledge the trauma of breast cancer than the author of the best-selling “Dr. Susan Love’s Breast Book,” now in its fifth edition.

That book, along with Love's early refusal to accept the oxymoronic (emphasis on moronic) “early detection is your best prevention” mantra of mainstream cancer and advocacy organizations, won her a place of honor among frustrated breast cancer activists, who know all too well that if you can diagnose cancer, you haven't prevented it. Detecting it, by definition, means it's there.

Activists have long pushed researchers to shift their focus from treatments and cures to true prevention.

Despite $4 billion spent on breast cancer research, researchers still don’t know what causes it or how to prevent it. Yet Love believes that the tools exist to “eradicate breast cancer within our lifetime” if we ask the right questions.

And for decades, Love has helped shine the spotlight on causes, not cures, to spare women from that dreaded diagnosis. But that goal will remain elusive, she believes, as long as researchers keep studying the disease in rodents. That’s because mice and rats don’t get breast cancer. Researchers have to give it to them.

So she’s been trying to wean researchers off rodents. “I can say this is a good study, you could do that in women, and they say, ‘Let me tell you about my rats.’ ”

Yet researchers can learn valuable insights into the origins of disease by comparing people with an illness to matched cohorts of healthy people, as the legendary Nurses’ Health Study has demonstrated for heart disease, diabetes and other conditions.

Finding the causes and, ultimately, how to prevent breast cancer requires a radical shift in thinking, Love said. And that means that at least some researchers have to give up their rats and mice and start working with the people who get the disease.

Researchers used to tell Love that even if they did want to study women, they didn’t know how to find them. But she knew that was the easy part. So for more than three years, the Dr. Susan Love Research Foundation has been recruiting an online "army of women" with a target of enrolling “one million women and a few good men.”

“Scientists come to us with studies that need people, and we e-blast them out to everybody in the army,” Love said.

So far, they’ve recruited 365,000 women for about 60 studies. Seven in 10 of the women don’t have breast cancer, but are "altruistic,” Love said. They’re willing to undergo unpleasant procedures to help researchers figure out root causes. In one study, women in the control group had to endure a sigmoidoscopy and a biopsy. And Love got more enrollees than researchers could use.

By the end of this summer, the foundation will be launching its own Health of Women Study. The large online breast cancer cohort study will follow women with and without a diagnosis to identify new risk factors. It will also follow breast cancer survivors to identify factors that predict long-term survival and consequences of different therapies.

Any woman over 18 can register online or with a mobile phone. (Men are welcome, too.)

Love’s study will let participants suggest questions they’d like to see tested, because she thinks you don’t need a PhD to come up with a good idea.

She told her San Francisco audience that early theories about the cause of human papillomavirus (HPV) came from observations of people who knew a man whose wife died of cervical cancer, and who then married a second woman who died of the same cancer. “They said, well maybe it’s the guy.”

“And then we figured out it was sexually transmitted, then we figured out it was a virus and now we have a vaccine.”

Potentially, Love reminds us, “Everybody is a patient.” She thinks eliminating disease is something we should all do together.

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