Its very name gives you an indication of what Living Beyond Breast Cancer (LBBC) hopes for women: to truly live beyond their diagnosis.
When radiation oncologist Marisa Weiss founded the organization in 1991, LBBC was comprised of a small staff providing for women in the local Philadelphia community.
Now, celebrating its 25th anniversary, the nonprofit has grown into a national organization, reaching more than 500,000 people and serving women all over the country.
“Our goals were to reach people in the Greater Philadelphia community, too, but always to reach people nationally,” explained CEO Jean Sachs, who has been with LBBC for 20 years, “and also make sure we weren’t just reaching women who were insured and had good access to care but also women who had poor insurance or weren’t insured and falling through the cracks. We had this vision even when we were in this tiny office with a few people.”
LBBC started because there was a need in the community to provide support not just for women going through treatment but also women who had finished treatment and still needed support.
“It’s not just the treatment — it’s all the things that happen after treatment and your body changes, your sex life changes, your relationship to the world changes,” Sachs said. “So we don’t just say, ‘We’re done with you now.’ We always want to be the organization that women can keep coming back to.”
The organization provides information, programs and resources about breast cancer, including webinars, conferences, personal blogs and special projects like writing programs.
For Sachs, who got into women’s health by working with former state Sen. Allyson Schwartz on women’s health-specific bills, it’s a different job every day — and feels like a different job every year given advances in technology.
“There’s always a new challenge and something to learn,” she said. “And breast cancer treatment has changed so much in the last 20 years — not as fast as we want it to, but there’s much more effective treatment.”
The fact that LBBC has been able to help so many women — about one in eight U.S. women will develop invasive breast cancer over the course of her lifetime, according to breastcancer.org — in the last 25 years and sit at the table with other breast cancer advocates is something Sachs is proud of.
“We just really know breast cancer,” she said, “so when people connect with us, we can really help make it so much easier and it never changes. The questions are always the same.”
Those questions are about chemotherapy treatments, hair loss and how to go to work, among others. In response, LBBC has created “an array of services” that are easily accessible.
“We just want to make sure people can get our information in a way that is comfortable for them,” Sachs said. “Not everyone wants to pick up the phone. Some want to hold the publication, others want to go to a conference. I’m glad we’ve been able to continue to do that and not just say, ‘You can only access us one way.’”
For Sachs, who grew up in a Jewish home, helping others is just one expression of her Jewish values.
“I knew my whole life I wasn’t going to go into corporate America,” she said. “I wanted to do something to help people and help them find their voice.”
Her mother battled breast cancer when it still wasn’t common to talk about it, Sachs added. “She was just all about helping people be empowered, and when she was first diagnosed with breast cancer in the ’80s, she said, ‘I’m going to tell everyone’ because at that time nobody talked about it.”
As we drown in a sea of pink ribbons every October, having an organization that strives to continually provide support for women going through — and after — a diagnosis is rewarding for Sachs.
“When you’re facing any hard situation, whether it’s cancer or divorce or death of a parent, I always believe if you have good information and support, it’s so much easier,” she said, “and yet for a lot of women that doesn’t happen that easily. So it’s been rewarding for me to see women come up to me and say, ‘This program is so helpful. I don’t know what I would have done without LBBC.’”
Knowing that there is always more research to be done when it comes to breast cancer, Sachs said the work LBBC does is even more important as the organization provides up-to-date resources and information.
“We fill an important niche of not being the hospital or doctor but being the place in between where you can get the support — you need it all, you need a great health care team and hopefully you have support at home — but it’s nice to have a place to find people who totally get what you’re going through,” she said.
Another resource LBBC provides is the Breast Cancer Helpline, which women can call and speak to a trained volunteer who has also been diagnosed with breast cancer.
For Dorel Shanon, who helped create the helpline, this resource became unexpectedly personal.
“I developed the program and facilitated the first training for the helpline probably about 20 years ago,” recalled Shanon, principal of Dorel Shanon Consulting, who attends Germantown Jewish Centre. “I was doing work at LBBC as a consultant. About five years into my relationship with them, I was diagnosed with breast cancer.”
Shanon was diagnosed in November 2001 and went through about a year of treatment and more years of hormonal therapy.
“The one thing that was incredible with the helpline is to be in the role of designing the program and training women and then be a recipient of the support the helpline volunteers provided,” she said. “I got to see it in action from a very different perspective.”
The helpline provides a listening ear from someone who knows what you’re going through, Shanon said, “someone who people can talk with who understands the experience. Having experience on the other side, it was an invaluable resource to me.”
As there are different treatments and even different types of tumors identified today, volunteers on the helpline are encouraged to share their personal experiences but not give any advice.
“I can share my experience and say, ‘This is what I decided and this is why,’” Shanon said. “But we stay away from saying, ‘You should have this reconstruction instead of this one.’ [There’s a] fine line of bringing your personal experience to it but not letting it cloud your responses.”
The resources LBBC provides are always sensitive to language, Sachs said, and written with a compassionate and supportive voice.
“For me, [LBBC] was one of the very few places that I found that talked about my experience, and breast cancer in general, in a way that generated tremendous help and a sense of connection to other people,” Shanon said. “I went to the sites, I picked up other books, and more often than not, other resources generated more fear, anxiety, less sense of community. LBBC made me feel less alone because of my connection with women there and also helped me to feel hopeful about my own diagnosis.
“They work really hard to make sure it’s helpful information, hopeful information, information people can actually use and live fully with the breast cancer diagnosis,” Shanon said.
Another way Shanon stayed involved with LBBC was through its annual Reach and Raise event. A local yoga instructor hosts an event on the Art Museum steps to raise funds for LBBC and talk about yoga as a means of wholeness and healing.
Shanon went the inaugural year, which was also the year she was diagnosed, and has gone ever since. Now, it’s become a family affair.
“When my daughter was 13, she created a team for the yoga event and her Bat Mitzvah project was to raise money for LBBC,” Shanon said. “She and I did that together every year after that. It was so lovely to have her participate in that way and pick an organization that had so much meaning for me and our family at the time.”
As a team, they have raised nearly $12,000 each year.
For Shanon, LBBC serves as a lifeline for those going through an experience that might feel completely alien. And, as its name suggests, it provides hope for the future.
“Hope is built into the name, Living Beyond Breast Cancer, and not have breast cancer define who we are,” she said. “For many of us — not all, but many — there is a life beyond breast cancer and [to] embrace that life and live it really fully and with a lot of hope and energy, I think, is what I got from my experience with them.
“I would love for every woman and her family and friends to be fortunate to connect with an organization like LBBC as they go through this,” she continued, “because it’s so potentially isolating and so frightening and otherworldly, you find yourself living in a parallel universe all of a sudden, and [with LBBC] you have a place that feels like a home.”
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