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."
Love came to the College of Notre Dame in 1970, a good Irish-Catholic girl, thinking she might become a nun. She had been taught by the School Sisters of Notre Dame when her family lived in Puerto Rico and knew the women's college had a strong science program, which almost no other women's college did.
She joined the convent in her sophomore year and the sisters sent her to Fordham University in New York to finish her degree. But she chafed at the contemplative life. Always interested in medicine, the proactive nature of surgery drew her. She often says that she just wanted to get in there and fix things.
Early on, she resisted attempts to pigeonhole her as a woman's doctor, but her empathy for terrified women who had found lumps in their breasts created almost a following, and she realized that she could help them in ways male doctors were not.
What began as a career path became a mission, and in 1992, she moved from Boston and Harvard to UCLA and a one-stop breast cancer center essentially designed for her.
Love has been a ground-breaker in other ways as well. In 1993, she and her partner, Dr. Helen Cooksey, won the four-year court battle in the Massachusetts courts for the right to a joint adoption of daughter Katie, who was born to Love.
It is a decision that ensures that a nonbiological parent in a same-sex relationship has legal rights to custody in case the couple breaks up or the mother dies.
In 2004, The New York Times carried the announcement of their San Francisco wedding. She and Cooksey are among couples whose marriage has survived the legal wrangling in California. And Katie graduates from Swarthmore this spring.
"For 20 years, I saw patients and operated," said Love. "But we were still doing the same things: slash, burn and poison, all of which has side effects and collateral damage."
And she was frustrated by a science community that insisted on studying breast cancer with rats "even though rats don't actually get breast cancer," she said.
"They kept telling me women are too messy. You can't control what they eat, what they do, you can't control their genes. Rats make nice, pretty science. And besides, they said, we don't know how to find women anyway.
"That," Love said she thought, "is something I know how to do."
Q&A with Dr. Love
Is progress in breast cancer research as stubbornly slow as it appears to be? Has significant progress been made in any aspect of the disease?
While we have made progress in better understanding the biology, we have not done as well at translating that to the public. For example, the reason "early detection" doesn't work that well is that there are five or six different kinds of breast cancer that grow at different rates. "Early detection" is best at the slow-growing, less aggressive ones. Also we are finding that to have cancer, you need both a mutated cell and a local and systemic environment egging it on. This actually opens up the possibilities for treatment. You don't just have to kill every cancer cell but can also change the environment through lifestyle changes, etc.
Self-exams or not? Mammogram or not? Hormones for menopause or not? Lumpectomy or mastectomy? Chemo or radiation? Considering the conflicting information out there, how can women feel confident about how they answer any of these questions?
Formal shower-card breast self-exams are no better than the normal poking around we all do. You should be aware of your breast, and anything new or different should get checked out. Mammograms in high-risk women after 40 and everyone after 50. Lumpectomy is as good as mastectomy at preventing recurrence and preventing death. No advantage to mastectomy unless the cancer is so big you cannot get it out with less. Radiation is added to lumpectomy or mastectomy because surgery can never get all the breast tissue out. It is another form of local control. Chemotherapy, hormone therapy and targeted therapy such as Herceptin are all systemic therapies aimed at breast cancer cells that may have already escaped and be in other part of the body.
Women who are newly diagnosed need to take a deep breath and realize that this is not an emergency. They need to take enough time to understand their options and what is the best approach for them. This means getting second opinions, reading and always taking a tape recorder to every doctor's appointment. This is not one size fits all, and it is important to get the right treatment for the kind of cancer you have and your situation.
How do you view the pink ribbon campaign? It seems to be a good way to increase public awareness, but is it that a meaningful way for us to assign our research dollars?
I think when the NFL is wearing pink we have reached awareness. It is time for the goal to shift from just being aware and raising money to directing how it is spent. I personally feel we need to focus on finding the cause of breast cancer so we can stop it. We have a vaccine for cancer of the cervix; there is no reason we can't do the same for breast. We also need to be willing to participate in the research, which all women (with and without breast cancer) can do by joining the ArmyofWomen.org. We will send you emails about studies, and you can decide which ones you want to participate in.
How to enlist in the Army of Women
Women and men, 18 and older of any ethnicity, with or without breast cancer, can enlist, at armyofwomen.org.
Those who register will receive two to three emails a month about breast cancer prevention studies. Members decide whether they fit the study's criteria and want to participate. Participation can involve anything from providing a blood sample to filling out a online questionnaire. Those who are not eligible or who do not want to participate are encouraged to forward the email to friends and family who may be interested.
If you go
NDM Love/Avon Army of Women Rally for Research runs 6 p.m. to 8 p.m. Friday at the MBK Gymnasium at the College of Notre Dame of Maryland, 4701 N. Charles St. Doors open at 5:30 p.m. Registration is free at http://www.ndm.edu/armyofwomen.