“The majority of women who get breast cancer have none of the known clinical risk factors for the disease,” said Love, president and founder of the Dr. Susan Love Research Foundation. “What that means is that we know very little about the conditions that allow the disease to flourish. We have made strides in how we treat breast cancer, but we still don’t know how to prevent this disease. We believe a completely new kind of study that traces both healthy women and breast cancer patients and survivors, and directly involves them as participants, will give us the data we need to find the cause and develop prevention. It’s time to shift some of our focus to preventing it altogether.”
When Dr. Love came to Dayton a few years ago as the featured speaker at Kettering Medical Center Foundation’s “Ribbon of Hope” luncheon, many women in our area signed up for her Army of Women campaign. Both breast cancer survivors and those who have never had cancer were needed.
The massive effort, initiated in 2008, sought to enroll one million women to work with researchers in order to “move breast cancer beyond a cure.” To date, the organization has nearly 370,000 enrolled, including many in the Miami Valley. More than 78,600 members have participated in the research process, and 66 research studies.
Those women who register regularly receive e-mails announcing new research studies and inviting participation. The variety of studies range from simple questionnaires to requests for blood samples, urine or breast tissue. Those who fit the criteria and would like to participate simply RSVP.
Studies range from the effect of birth control pills or soy on breast tissue to research on cognitive complaints after breast cancer treatments such as memory, concentration and multi-tasking.
Darlene Braunschweiger of Centerville, an 11-year breast cancer survivor, said she has participated in Army of Women studies because she appreciates Dr. Love’s efforts to “conquer this issue through the grass roots.” The studies for which she’s signed up, she says, have only involved filling out questionnaires.
The new HOW project, designed to facilitate finding the root causes of breast cancer, is open to any woman 18 and older as well as interested men. HOW will study women who have not been diagnosed with breast cancer, as well as those who have, in order to investigate its cause and new risk factors for the disease.
The goal is to include those of all ages, ethnic backgrounds and races. Those who participate will be asked questions about their health and health habits over time to provide a view of what people are doing and how their health is being affected.
“In addition, we will be asking specific questions of women and men living with breast cancer to give us ideas about what, beyond treatment, leads to long-term survival as well as what the real long-term side effects of current treatments are,” according to the study proposal. “We will include specific questions for underrepresented groups such as people with metastatic disease, men with breast cancer, transgender individuals, and women from particular ethnic groups. Finally, this study will address the questions you’ve been asking: is there an environmental cause of breast cancer, are fertility drugs and bio-identical hormones safe, and what about deodorant and underwire bras?”
The governing structure, explains Dr. Love, will include participants of the study, as well as expert epidemiologists, statisticians and clinical researchers. The HOW Study enables researchers to pose questions rapidly using a large sample population. The online and mobile platform will make it possible to capture more relevant data than has been feasible before, and will empower consumers to become directly and actively engaged in research. The interactive nature of the study will facilitate study participants posing questions based on their concerns, so that everyone can play a tangible role in working to end breast cancer.
“The important data collected as a part of HOW will be shared with researchers who can use it — a practice virtually unheard of in the research community,” Love said. The data will also be shared with the participants, who are considered major stakeholders in study.
Love says the HOW team will work with specific subgroups including people with metastatic disease, young survivors and men with breast cancer to develop relevant questions .
Love says almost 200,000 new cases of invasive breast cancer can be expected in the United States this year alone and 108 women continue to die from the disease every day. Breast cancer affects 1 in 8 women in their lifetimes.
The study is being conducted in partnership with the Beckman Research Institute at City of Hope.
Dr. Love’s book is titled “Dr. Susan Love’s Breast Book.” To sign up to participate in the Health of Women study, see www.healthofwomenstudy.org
To learn more about the Army of Women: www.armyofwomen.org
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