Dr. Susan Love recruits people to participate in breast cancer… (Handout photo )
For years, Dr. Susan Love was an "army of one," urging medical science to focus on the cause of breast cancer instead of its treatment, on women instead of laboratory mice.
Today, thanks to efforts of the best-known breast cancer advocate, there is an "Army of Women" — women (and men) volunteers who have signed up online to participate in studies that might find the answer to a stubborn cancer that claims almost as many women's lives today as it did 30 years ago. Every year, an estimated 200,000 women will be diagnosed with breast cancer in the United States, and 40,000 will die.
Love will return Friday to the College of Notre Dame, where she was once an undergraduate pre-med student, on a recruiting trip. The school hopes to send her back to California with 25,000 more names for the data bank she began to assemble three years ago with the support of the Avon Foundation and her own foundation.
"I had this idea for a long time, but I had a hard time getting it funded," Love said in a telephone interview from Los Angeles. "Everyone kept saying, 'It will never work, no one will ever sign up.' Then Avon gave us a grant, I went on the 'Today' show, and we had 150,000 almost immediately."
Love, author of the "Dr. Susan Love's Breast Book," now in its fifth edition, is as well-known for her impatience as she is beloved by her patients. And for many years she has urged science to focus on the cause of this disease instead of its early detection or treatment. She is convinced that the answer will reveal itself the way it has for cervical cancer, a disease found to be caused by a virus and for which there is now a vaccination.
"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."
But mice are easier to corral than women for testing, and researchers often gave up in the face of the time and money needed to recruit them. Newspaper ads, brochures in doctors' offices and letters to patients weren't very productive. And the healthy women who were also needed for research weren't stepping forward.
Today, Love recruits volunteers online. They are matched with appropriate studies she and her team have vetted. The result: Of the 354,000 men and women who volunteered to answer some questionnaires or give a blood sample or some cell samples, 55,000 are now participating in more than 50 studies.
"For many of these studies, we get them the numbers they need in a week. If it is just an online questionnaire, we get everyone they need in two days," said Love, "instead of three or four years."
Because the biggest stumbling block — and the biggest expense — in research is the recruiting of subjects, scientists often design studies calculated to include the fewest people necessary instead of basing a study on the number actually needed.
The Army of Women database solves that problem. The goal is to recruit a million volunteers, and this recruiting technique has so far been such a success that the Lance Armstrong and the Michael J. Fox foundations hope to imitate it.
"Women are very altruistic," said Love. "They are more than willing to do this."
Dr. Vered Stearns, co-director of the Breast Cancer Program at the Johns Hopkins Kimmel Cancer Center, is one of the researchers who has benefited from the Army of Woman database.
"Initially, we were recruiting two to four women a month," said Stearns, who used the traditional methods of finding women. "It is expensive, and you are really lucky to get 1 percent of people calling you back. And you have to keep sending out letters."
But since an email blast was sent by the Army of Women, her team has been able to sign up 10 to 20 women a month.
The response has been so great that she has increased the study group from 300 to 400 women, allowing more analysis.
"It has been an absolutely amazing experience," said Stearns, who will participate in a panel discussion at Notre Dame on Friday.
"And the interaction between us and the participants has been terrific." That's because the people in the Army of Women have already made the decision to be part of a research program. They are not receiving letters or calls out of the blue."
Love is currently a clinical professor of surgery at UCLA's David Geffen School of Medicine and president of her own foundation. She has retired from surgery and spends her energies now recruiting for the Army of Women and planning ways to mine the data base that continues to grow. She is convinced that the secret to unlocking breast cancer is hidden there.
"The majority of women who get breast cancer have no risk factors," said Love. "And the majority of the women in the Army have no risk factors. We want to follow them over time because we know from this that we are missing something big."