Since the blogosphere has been abuzz with news about breast cancer organization Susan G. Komen for the Cure pulling funds from Planned Parenthood, I thought I’d post the slightly revised version of an interview I did several years ago with Dr. Susan Love for the now-defunct 365gay.com. Her Dr. Susan Love Research Foundation is taking an innovative approach to breast cancer research, building an “Army of Women” (and some men) to participate in studies and surveys related to the disease. She’s committed to including LGBT people in her Army, as evidenced by a recent call for lesbian and bisexual volunteers for the “Variations in Health Needs of Breast Cancer Survivors Study.” You may also remember Dr. Love from her guest appearance on Season 3 of The L Word.
This piece first appeared in October 2009.
Dr. Susan Love Recruits an LGBT Army Against Breast Cancer
“Breast cancer doesn’t have to go on to another generation,” said the renowned breast cancer advocate and surgeon Dr. Susan Love. “We can be the generation that stops it.” Love is recruiting a one-million strong “Army of Women” (and some men) to do just that. Love, an out lesbian, is also committed to making the LGBT community an integral part of the effort.
She and her Dr. Susan Love Research Foundation launched the pioneering initiative in 2008 with funding from the Avon Foundation. Now, 311,000 people have signed up [360,000 as of October 2011], agreeing to receive e-mail updates from the Army of Women about breast cancer studies looking for volunteers. Some studies might involve only a simple questionnaire. Others could require blood, urine, or milk samples. Some could involve clinical trials, although most will not. If a person fits the criteria and wants to take part in a particular study, she clicks a link to respond. There is no obligation to participate in any of them.
One thing that makes Love’s Army unique is the large number of healthy women taking part. Eighty percent of members have not had breast cancer and are not at high risk, Love says. Most previous studies of breast cancer, however, have been on women with cancer or on animals. Love believes that only by involving real women, with and without cancer, will we be able to determine how real women develop the disease. Currently, she said, “the risk factors that we look at only predict about 20 percent of breast cancer, which means we just don’t know what causes it.”
She thinks many are ready for a different approach, explaining, “The fact that in less than a year we have 311,000 signed up . . . shows me that there’s an enormous appetite out there for people to be involved in finding the solution.”
She added, “This October, everything is pink everywhere, and people are walking and running and buying products, but the question is, where’s the money going, and how is it changing things? . . . I think it’s really time for us to put our bodies on the line and say we’ll be part of answering these questions.”
As of October 2009, more than 11,000 Army volunteers have participated in 14 studies by approved independent scientists [50,000 volunteers in 52 studies as of October 2011]. “The [researchers] that have used it have been thrilled,” Love reported. “We’ve closed many studies in 24 hours that usually take them five or six years to recruit for. That means we get answers faster. That means you can do the research cheaper.”
It also makes it easier for researchers to study small subgroups of the population, including parts of the LGBT community. Looking at breast cancer in lesbians is one obvious avenue for research, but Love also wants to investigate the almost entirely unexplored area of breast cancer in transgender people. “I think there’s a wealth of information in studying that community,” she asserted. “That’s a community where you’ve taken different types of hormones that do affect breast cancer [in non-transgender women] at different times in life, and nobody’s really studied what does that do to the breast tissue [of transgender people]. Are they at risk? Aren’t they at risk? We have no idea.”
Love wants to study the risks for both transgender women as well as trans men who have not had their breast tissue removed. Additionally, she would like to find funding to study the breast tissue of those who have had it removed after taking testosterone for some time.
Love also wants to determine the risk factors for breast cancer in non-transgender men, which occurs about 2000 times a year in the U.S. She is working with the John W. Nick Foundation, which promotes male breast cancer awareness, to actively recruit men to the Army. “Nobody’s really been able to track male breast cancer before, because it’s not that common,” she said. “By doing it through the Internet, we can probably have the biggest cohort of male breast cancer survivors without too much trouble.”
By looking at these subgroups, Love says, we might be able to discover hints about the causes of breast cancer that get washed out when looking at the broader population. That could have benefits beyond the smaller groups alone.
Until causes and cures are found, however, breast cancer is still a threat. For LGBT people who are diagnosed, Love advises being out to our doctors. “If the doctor has a problem with that,” she said, “then you want to know and get another doctor, because it’s bad for your health to be worrying about what’s going to leak out or what they’re going to think while you’re trying to deal with something as serious as cancer.”
She also offers some general advice: “The important thing to know about breast cancer is it’s not just one disease. If you get diagnosed with breast cancer, it’s really critical to not rush into anything, to take a deep breath, to get all the information.” Tests can now show what type of cancer it is, which will determine the best treatment.
Love feels her Army could have an impact on overall health care reform in our country, too, by providing a model for the type of research that could be done with electronic medical records. She also notes that because of the influence of pharmaceutical companies, attacking breast cancer has largely centered around drugs and treatments, with new ones piling on old. “All of those treatments have significant side effects,” she said. “Changing the aim to finding the cause is a more public-health way to approach things.”
The benefits may not be in breast cancer alone. “If we have a million people giving us their information,” Love said, “then it would be a crime if we just looked at breast cancer. . . . But we’re starting out with that. That’s certainly my claim to fame, so I can recruit people on that, and then we’ll go from there.”
Queer people will play an important role, regardless, Love insisted. “The LGBT community has been in the forefront of most major health movements. I think we can do it again.”
Find out more about the Army of Women at armyofwomen.org.