Conversation With Belle Shayer

Belle Shayer will turn 90 this year; she is the only Breast Cancer Action founder still living. We talked to her recently about how she first got involved with Breast Cancer Action, what the early years were like, and what makes her proudest about the organization she helped create 30 years ago.  

After your diagnosis and treatment, you could have just stayed home and taken care of yourself, but instead you helped create Breast Cancer Action. Can you talk about how and why you got involved?

In 1985, I had a breast cancer recurrence and had a mastectomy. A few years later, I met Elenore [Pred] at the Commonweal Cancer Help Program retreat. After spending a week there, we started attending meetings at the Cancer Support Community together. We met Linda Reyes and Susan Claymon through the Cancer Center.

Those meetings were fine but we felt they weren’t meeting our needs. People were discussing their diagnosis and treatment, what their doctor told them, issues like that. We were more into education and activism. We felt we knew very little about breast cancer, and we wanted to learn more. We wanted to educate ourselves, and everyone else as well.

In those days, people didn’t talk about having breast cancer, at least publicly. People didn’t say “I have cancer” so it was hard to learn about the disease. We wanted to educate ourselves, but we didn’t know how we were going to do that. But Elenore was a real activist. She had a lot of friends in the gay community, and she reached out to friends who were involved in ACT UP. They helped us learn how to become activists. They taught us the basics: how to set up meetings and how to get information out. They were always there to answer whatever questions we had.

Early on, we agreed that breast cancer is not a personal tragedy, but an economic, political, systemic issue. The question was, how were we going to get that point across to political leaders?  We looked to the AIDS activists to see how they were doing it, and they were instrumental in getting us on the right path. They said, “Educate yourself medically and politically, speak up, and stay in their faces.” So that’s what we did.

Can you talk about the early years of the organization?

We all agreed that our first goal was to educate and learn for ourselves what we were dealing with. We met on the first Saturday of each month, and we invited speakers. We formed study groups that met on the third Saturday of the month. In the study groups, we learned how to use a medical library. I remember that the first study group focused on chemotherapy.

We decided on the name, Breast Cancer Action, early on. In our early meetings, we’d have 12 to 20 people. We started out meeting at someone’s house, often Elenore’s, but when those meetings got too big, we started meeting at the Cancer Support Community center on Lake Street in San Francisco.  Elenore was president, Susan Claymon was vice president, Linda Reyes was secretary, I was treasurer. I very quickly started trying to figure out how to become a 501(c)(3). Very early on, we decided we wouldn’t take money from drug companies, or companies that contributed to pollution. That was an early decision that had a big impact.

We published a newsletter – it was one page, typed on both sides.  The first one was published in August, 1990. Our second newsletter was in October, 1990, and it was a page and a half. It included a legislative update, and suggestions for books to read. 

We learned pretty quickly that breast cancer and political activism was a subject the media was interested in. Elenore Pred was a perfect spokesperson for the media. She was smart and articulate and outspoken. We had lots of media attention–US News & World Report did an article on Elenore for a series on the most notable women of the year. There were articles in Newsweek, the New York Times, and coverage on the morning shows and 2020.

We started to get out there and do things as quickly as possible. We gave speeches, appeared on panels. We worked with other cancer organizations, and in May of 1991, we helped organize the first Mother’s Day March for Breast Cancer Awareness. The focus was on prevention and funding for breast cancer. More than 500 people attended.  

It took a lot of time—for all of us. Susan worked, I worked, Linda did too.  Elenore was recuperating. She had been living and teaching in Morocco when she had a breast cancer recurrence and they sent her home. And she had the treatments she needed, but they were not very successful. Even though she was sick, she was involved 100 percent all the time.

I remember I would come up to the city early in the morning and she would be in bed, making phone calls to the east coast, to Congressional aides, to other activists. She started early in the morning and just kept going–she had her cat on the bed with her. She was very sick at the time but you would never know it. When she could, she volunteered at the hospital, helping to care for newborns with AIDS. She was amazing, and she had a delightful sense of humor. Elenore knew how sick she was. But she was determined that it wouldn’t slow her down.

There were other big milestones over the years. Susan Claymon was the first woman to address the President’s Breast Cancer Council. We went to Washington, D.C. to push for money for breast cancer research. We spoke to congress people, I spoke at the Department of Defense. We delivered 2.6 million signatures to President Bill Clinton to demand a national breast cancer strategy, which the Clinton Administration later launched. 

In 1994, we scored a first at the American Association for the Advancement of Science conference, which was held in San Francisco. We requested that they include a symposium on the environment and breast cancer.  It turned out to be the most widely attended meeting at the conference. That was very gratifying and very impressive.

You’ve said you are surprised that Breast Cancer Action is still going strong. Can you talk about what makes you proudest about the organization you helped create?

What makes me proudest is the fact that Breast Cancer Action is still going—and very effectively. It is recognized nationally and internationally as an important voice in support of women’s health. We’re lucky in that we picked too outrageously effective Executive Directors, Barbara Brenner and Karuna Jaggar, and they’ve steered us very well. I continue to be very impressed by all of you gals and guys who do the work and keep the organization strong. 

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