A Voice for the Voiceless

By Pat Battaglia

In 2000, Beverly C. lost her husband to Alzheimer’s disease. Closely involved in his care throughout his illness, Beverly was too overwhelmed to reschedule her annual mammogram after an appointment was cancelled by her imaging center. After her husband passed and she began picking up the pieces of her life, she went to her primary care physician for a physical. At this visit, the doctor discovered a suspicious area in Beverly’s breast and referred her to a surgeon for a needle biopsy. This led to three inconclusive needle biopsies. Beverly felt she shouldn’t be complacent about the services in her downstate NY community and called the American Cancer Society, where it was suggested that she consult a comprehensive cancer center if she could. Beverly chose the Memorial Sloan Kettering Cancer Center.

“I had a great surgeon there,” Beverly shared in an interview she graciously granted while in Rochester last autumn for our ARTrageous Affair. “She understood that I was really concerned about treatments.” Ultimately, Beverly underwent a lumpectomy. During her surgery, a frozen section biopsy was conducted; results were still inconclusive. It wasn’t until the full pathology report came back about one week later that a diagnosis was reached: invasive lobular carcinoma, stage I. Beverly did indeed have breast cancer.

She began reading extensively about her diagnosis, including the side effects of potential treatment options available to her. “I was referred to the medical oncologist, and she didn’t want to discuss any options,” Beverly recalled. “She said, ‘You have to do chemo, and you have to do Tamoxifen.”

“You don’t tell me I have to do anything,” Beverly asserted. She made an appointment to start chemo the following week, then went home and slept on it. In the morning, she called to cancel the appointment. The voice on the other end of the line asked, “Do you want to reschedule?” 

“Not at this time,” Beverly answered. “And I never heard from them again.”

Around the same time, Beverly made a life-altering discovery: at the Benedictine Hospital in Kingston, NY, there was a breast cancer support program. She began attending. “I found women there who didn’t make me think I was crazy to think about not [doing chemotherapy], considering my pathology. And one of the women in particular looked at my pathology report with me and felt that it was a reasonable decision.” Beverly had found kindred spirits in those who maintained that breast cancer patients should have access to all information about all their treatment options. Some of the women were in the early stages of forming an organization that has grown roots and blossomed, and is now known as Breast Cancer Options (breastcanceroptions.org). Beverly became a member of the board of directors and has served, mostly as president or vice president, ever since.

In early February of 2001, Beverly opened the Sunday New York Times to find a full page ad for a three-day, sixty-mile walk sponsored by the Avon Foundation. The dual purpose of the event, the ad stated, was to raise money for breast cancer research and provide services for underserved women. It was the second goal – serving underserved women – that caught Beverly’s attention. She and a friend each raised the required minimum fee to register – around $1,800 – and took part in the walk.

Soon afterward, Beverly and the Founding President of Breast Cancer Options, Hope Nemiroff, decided to investigate the application process for an Avon Foundation grant and traveled to New York City for an informational meeting. “It turned out that their ‘services for women’ were limited to early detection and they weren’t even paying for mammograms,” Beverly recalled. “No money was allocated for patient programs. We were so taken aback.”

Beverly and Hope returned home angry and dismayed, but undaunted. “We had an idea to create what became our Companion Advocate program,” Beverly continued. “Our goal was to train survivors to be able to accompany people newly diagnosed with breast cancer on their medical visits. We subsequently submitted the proposal to the New York State Department of Health and received a grant of $100,000 over two years to establish the program. That is what gave us the foundation to organize and survive.” While the experience with the Avon Foundation added to Beverly’s motivation to be an active advocate, she emphasizes that it was a long time ago and the Foundation has funded many excellent programs since that time, including support for patient and research advocates.

By this time, it was 2002, and Beverly was diagnosed with a second primary breast cancer; a small ductal carcinoma in the other breast. She opted for a bilateral mastectomy and hasn’t looked back.

With her background in nonprofit administration, Beverly was recommended to become a peer reviewer for the Department of Defense (DOD) Breast Cancer Research Fund. “I didn’t know anything about that,” Beverly said with a laugh. But she soon found herself among some of the top scientists in the country, adding her survivor’s perspective to discussions about grant proposals vying for national funding. “That put me in the mindset that I can really do something that has impact.”

In a chance encounter at a 2003 reception for advocates and researchers, Beverly met Barbara Brenner, then Executive Director of Breast Cancer Action (BCA), a national grass-roots organization based in San Francisco. BCA was collaborating with other organizations, including the Coalition, on a project called Follow the Money, which called for more accountability by companies that raise funds for breast cancer while encouraging consumers to question where their contributions go. This was the roots of a pink postcard campaign calling for more accountability from Avon, and it is how we first came to know Beverly at the Coalition. We were in on the ground floor of this initiative, now known as Think Before You Pink (thinkbeforeyoupink.org), which has toolkits and other resources for consumers.

In 2010, Beverly accepted a position on the Board of Directors at BCA, and served until she termed out in May of 2018. She is still active as a non-board member while remaining strongly connected to her home base: Breast Cancer Options. 

As a member of the Coalition’s Research Committee, we welcome Beverly to Rochester every year to sit on the panel that reviews proposals for funding through our Research Initiative. In September of 2018, she joined us once again at our ARTrageous Affair as the deserving recipient of the 2018 Advocate’s Spirit Award, which was presented to her that evening.

At 84 years young, Beverly remains a force to be reckoned with. “I’m very interested in prevention; in primary prevention and in environmental issues. There is not enough attention or money for research in those areas. Looking for solutions keeps me motivated. But what also keeps me motivated is that I’ve really come to understand that people get something from what I do,” she shared. “I’d be remiss if I didn’t mention that I’ve also been a patient advocate member of the Cancer and Aging Research Group (CARG) for eight years. CARG is dedicated to bringing geriatric oncology researchers together to improve the care of older adults with cancer.”

And she continued, “I have gotten to wear so many, many different hats as a patient and research advocate because so many doors have opened. Although my own journey has not been an especially tough one in terms of the cancer experience itself, I feel it’s very important that I be a voice for people who cannot be a voice for themselves. I take that very, very seriously.”

Commitment. Passion. Insight. There are many words to describe Beverly. We at the Coalition are delighted to add one more word to that list: friend. As an accomplished advocate, Beverly Canin truly is a friend to anyone who has ever been diagnosed with breast cancer.