Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Sophie Roell
If finding out I had a BRCA1 mutation wasn’t already stressful enough, it got even worse when I tried to do something about it. I was 30 years old, and because I wanted to preserve my option to have children, my only solution was surveillance. But figuring out how to go about it wasn’t easy.
The breast surgeon with whom I consulted at a local New York breast cancer center seemed brilliant, but took little interest in my worries about my ovaries. One doctor told me I needed to be on the Pill to reduce my risk of ovarian cancer, while another suggested quitting the Pill because it raised my breast cancer risk. It all seemed random. I had the feeling if I walked out the door and never returned, no one would even notice.
The Lynne Cohen Foundation for Ovarian Cancer Research is changing this frustrating type of experience, revolutionizing early detection and screening of women’s cancers with their comprehensive, multidisciplinary programs for breast and ovarian preventive care. In clinics at four major cancer centers across the country (see below), women who worry they are at high risk have all their concerns and questions addressed in one place. Here oncologists specializing in breast and gynecologic cancers, and counselors (who provide genetic counseling, lifestyle counseling and psycho-social counseling) are available under the same convenient roof. “The breast and gynecologic specialists communicate with each other,” says Trudy Harris, the Foundation’s Co-Executive Director. “This multidisciplinary concept is important to us but right now most medical institutions aren’t set up that way.”
While the clinics address patient care, they also facilitate research under the aegis of The Lynne Cohen Consortium. Pooling data from the high-risk community served by the programs will link women at risk with the science of screening and prevention. A data bank and tissue repository including other biological samples from Lynne Cohen Clinic patients is in development and will vastly improve early detection efforts for both breast and ovarian cancers.
At a Lynne Cohen Consortium meeting I saw the Foundation’s vision at work: doctors and researchers from each of the sites sharing information and discussing their various research protocols. Topics ranged from the highly technical (reduction of false positive MRI screenings) to public health issues (how to communicate cancer risk issues to minority women). One study will examine the potential for using aromatase inhibitors, used widely for breast cancer treatment, to prevent the disease in high-risk women.
At a Foundation-sponsored symposium, The Emerging Role of Screening and Prevention in Women’s Cancers, medical specialists from around the world presented their ideas, research and hopes for future improvements. Most promising is the use of MRIs for early breast cancer detection (see “MRI Screening for High-Risk Women”) and research into blood proteins (see “Proteomics: New Hope for Finding Ovarian Cancers in High-Risk Women”).
Harris is excited and encouraged by all the progress.“Screening and prevention is a new scientific frontier, an emerging field, and we’re making strides.” I hope she’s right. I watched my mother die painfully of ovarian cancer when I was nine years old. With my lifelong dread of the disease, I sometimes forget the simple point driving the Lynne Cohen Foundation’s work: breast and ovarian cancers are curable diseases when found in early stages.
Sophie Roell is a freelance writer in New York.
Established in 1998,The Lynne Cohen Foundation is dedicated to the life, character and strength of its namesake, who died of ovarian cancer. Although Cohen didn’t carry a genetic mutation, she was concerned her three daughters might be at risk. Since then, through preventive care programs at major cancer centers throughout the country, the Foundation created by Cohen’s daughters focuses on the emerging role of screening and prevention in women’s cancers.
*Focus on providing excellent medical care to underserved, uninsured minority women.
Call 877-682-7911 or visit www.lynnecohenfoundation.org for more information about available services, clinical trials, conferences, research and related events.
For a list of other facilities that offer care for high-risk women, see the Finding Healthcare portion of our website.