Transforming Health Care through Innovative and Impactful Research

"You never know where life will take you," says Beverly Canin. "When I was diagnosed with breast cancer very soon after my husband died in 2000 - following a mercifully short three years of suffering from Alzheimer's disease - I was experiencing very mixed emotions." While she was feeling lost and alone on the one hand, at the same time she was feeling comforted by friends and family who had offered a wonderful outpouring of goodwill and friendship amid the chaos.

Beverly remained silent about her potential diagnosis for nearly 3 months while she underwent a succession of mammograms, needle biopsies, sonograms, and the eventual excisional biopsy that finally confirmed her diagnosis. "I didn't want to add worry to my friends and family who were habitually so caring that I had developed a creed: `I don't have to worry. I have you to worry for me!'" But as Beverly began to reveal the diagnosis, as she had long suspected, the response was tremendous. Indeed, less than a year after her initial surgery, friends and strangers donated more than $7,000 endorsing her participation in an Avon 3-Day Walk of 60 miles - mostly in response to a single appeal letter she wrote. As Beverly says, "I believe every bit of what I do today is informed by the comfort and well-being engendered by such validation."

Commuting nearly 100 miles to New York City for definitive diagnosis and treatment, Beverly was surprised to discover a "very vibrant oncology support program" at the Fern Feldman Anolick Breast Center at Benedictine Hospital in nearby Kingston, New York. There she found encouragement to thoroughly research her choices before making decisions about care and treatment. "When I decided, given my particular medical circumstance, not to undergo chemotherapy or radiation, nor to take Tamoxifen - all of which were prescribed or strongly recommended by doctors (and many of my friends) - I found others who had made similar decisions and were surviving. I also found many who, though they followed the conventional standard of treatment, showed respect for my decision."

Beverly found continuing support and encouragement when, less than a year and a half later, she was diagnosed with a different primary cancer in her other breast, prompting the very difficult decision to undergo bilateral mastectomy without reconstruction. Encouraged by the warmth showered upon her from the beginning, Beverly continued attending a support group as well as special informational sessions and workshops on relevant topics including many complementary modalities. In attending these events, Beverly had begun her new life as an advocate for breast cancer research and prevention. "I learned about the newly-incorporated Mid-Hudson Options Project [later Breast Cancer Options, Inc.], and I became an active member, contributing my experience in program administration and grant writing to prepare a proposal to the New York State Department of Health for which we received a $100,000 award." The much-welcomed grant supported the development of the organization's signature project, the "Companion-Advocate Program," in which specially trained volunteer survivors accompany people newly diagnosed with, or facing diagnosis of, breast cancer to medical appointments.

As a result of Beverly's determination and success, the Director of the Oncology Support Center nominated Beverly to be a consumer reviewer for the Department of Defense (DOD) Breast Cancer Research Program (BCRP). Beverly went on to join the Board of Directors of Breast Cancer Options (BCO), becoming acting President in 2003 and President in 2005. Proud of the many accomplishments of BCO, Beverly is quick to offer, "All of BCO's programs are free."

"In addition to BCO's membership," Beverly says, "I maintain a personal membership in the National Breast Cancer Coalition [NBCC], attend most of the Annual Advocacy Training Conferences (acting once as a panel participant), and have served on two committees." Beverly thinks she may have 'put the cart before the horse' as she was a BCRP consumer reviewer twice, and attended the DOD's 2002 Era of Hope meeting in Orlando before finally being able to attend NBCC's Project LEAD (Leadership, Education and Advocacy Development) in January 2003 and further increasing her scientific exposure and knowledge at the 26th Annual San Antonio Breast Cancer Symposium in December 2003, which she attended under the sponsorship of the Alamo Breast Cancer Foundation. From these experiences, Beverly grew more confident, viewing her contributions to discussions as more substantive in recent years than they may have been at the beginning. "I have been privileged to serve as an ad-hoc consumer reviewer on an integration panel once, and these trainings definitely bolstered my confidence to serve as an equal participant during that review," Beverly asserts.

Particularly passionate about issues regarding the relationship between the environment and breast cancer, Beverly is frequently involved in many forums and presentations that deal with lifestyle changes for better health, especially those related to breast cancer risk. She serves as BCO's alternate delegate to the Board of Directors of the New York State Breast Cancer Network, attending all meetings and voting if the primary delegate is absent. In addition, Beverly is an individual member of Breast Cancer Action, moved by their "Think Before You Pink" campaign, which addresses issues of cause marketing and accountability. She also joined the Follow the Money Coalition, an ad-hoc group of nationwide advocates concerned about transparency and accountability in corporate fund-raising for breast cancer, and has been active in, and served briefly as vice-president of, the Mid-Hudson Valley Affiliate Chapter of Sisters Network, Inc. Beverly adds that she sees one of her main roles as being "a liaison between the organizations to encourage supportive collaborations and communication."

Despite all of the good that she is able to accomplish, Beverly is still "very frustrated and disappointed that there is not more focus in the scientific community on primary prevention of breast cancer. Prevention is the cure," she proclaims. "Until there is at least equal emphasis placed on research directed toward primary prevention as there is placed on improved treatment, there can be no definitive cure. As long as undetected cells can remain in the system to form tumors - sometimes many years later - the best we can expect is lasting remission." Recalling her application to attend Project LEAD, Beverly is struck by how much one particular paragraph still resonates: "My real concern is to become a more effective advocate for public policies and private research that lead toward prevention and understanding causes (not just 'cure') of breast cancer. If anything, my experience with the DOD BCRP makes me more aware of the urgency of informed consumer voices. Scientists need to understand that there are lives, not just test tubes and slides, behind their endeavors; government policy makers and administrators need to hear ceaselessly from consumers; and we need to be heard in their languages."

Even with her concerns, Beverly remains acutely aware of the constant evolution of trust between the consumers and scientists who participate in the DOD BCRP. She feels there was still palpable skepticism among several scientists regarding the presence of consumer reviewers, when she participated for the first time in 2001. However, she admits that some consumers then did not understand the breadth of the issues scientists face. "While we [as consumers] are no less impatient for major breakthroughs, I believe we are more capable of recognizing and articulating all issues in our evaluations and discussions," Beverly offers. "Some scientists have said they believe consumer reviewers should be included in peer reviews everywhere, and most now acknowledge consumers' expertise as survivor/advocates." Considering the knowledge, determination, and potential impact of consumers like Beverly Canin, this proposition is very easy to understand.