Hirshberg Foundation builds community of support for those affected by pancreatic cancer
Survivors, patients and family members touched by pancreatic cancer will come together Saturday, March 11, to share their stories of resilience, along with top physicians discussing the latest research, for the 17th Annual Symposium on Pancreatic Cancer at UCLA. The symposium will be held in person, at the UCLA Luskin Conference Center on Westwood Plaza, and online.
Partnering with the UCLA Agi Hirshberg Center for Pancreatic Diseases, the symposium brings together a supportive community of those affected by pancreatic cancer — with the message that detection and treatment are constantly improving, and it is no longer certain the disease will be fatal.
The symposium’s Survivor & Caregiver Panel will include a very grateful Judith Anne Desjardins, who credits her quality of life to the center, where she received support and guidance after she completed medical treatment for pancreatic cancer.
"I think the Hirshberg Foundation is wonderful, I really do," Desjardins said. “After I finished my treatment through UCLA, Hirshberg was a godsend for me because I didn't know what to expect. In the media, you often hear only bad prognoses for people with pancreatic cancer. Throughout treatment, I was isolated and afraid. Was I going to die, even though I received treatment? Would I only live a short time?”
Desjardins said when she found the Hirshberg Foundation’s website, she started watching interviews with long-term survivors who had lived with the disease for up to 20 years.
“It was really helpful to know that everybody doesn't die from pancreatic cancer,” she said. “That's immensely valuable to your peace of mind, and it gives you a sense of hope that you, too, can be a long-term survivor.”
The annual symposium is a great way to bring medical staff together with families and patients to support one another, especially for patients who need that reassurance that they can still have a life, Desjardins said.
"It's just great that somebody cares about us," she said.
That caring went a long way for Desjardins after she had distal pancreatectomy surgery in October 2020, which entailed removing 40% of her pancreas, her spleen and eight lymph nodes. Then she had five months of chemotherapy, during which she developed blood clots in her lungs.
When she came through all of this, Desjardins was happy to find support at the Hirshberg Center.
As a holistic psychotherapist, she knows "the importance of treating body, mind, emotions and spirit." She now has been free of cancer for 29 months. She likes to encourage people with pancreatic cancer to use the Simms/Mann-UCLA Center for Integrative Oncology and the Hirshberg Foundation, which provide services ranging from counseling to exercise programs to financial aid for family members.
Building a community
The Hirshberg Center was established in 1997 by local philanthropist Agi Hirshberg, who lost her husband to pancreatic cancer. The annual symposium was started in 2005 to help build a community of support for medical staff, patients and families.
Hirshberg said that for the first few years, the symposium "was just strictly science” as doctors compared gains in research and treatment. But as the program grew, they added more survivors and inspirational storytellers, and the symposium "grew year by year as it developed."
Hirshberg said that since losing her husband, her life's passion has been to help others to survive this experience.
"My ultimate dream is that our children might live in a world free from the shattering impact of pancreatic cancer," she says in her foundation's mission statement. "Together, we will make that dream a reality."
Also joining the symposium’s virtual panel, Saturday, will be pancreatic cancer survivor Evelyn Dineen. While on vacation in 2015 at Lake Tahoe she was enjoying a nice dinner out, when her husband looked at her and told her that her eyes were yellow. That was the first sign of her condition.
Dineen had surgery and other treatments in 2016 and started using support services at the Hirshberg Center.
"I just can't say enough about the UCLA team and the Hirshberg Foundation. Agi Hirshberg is unbelievable. Just an amazing woman to have put this together and all the good she has done for patients and their families over the years," Dineen said.
Like Hirshberg, Lydia Calderon knows all too well the pain of losing loved ones to pancreatic cancer.
Calderon's father, Antonio Ontiveros, died from the disease in 1993, just seven weeks after diagnosis. Then, 20 years later to the month, she lost her husband, Dan Calderon, to pancreatic cancer — also just seven weeks after diagnosis.
With that kind of devastation, Calderon needed some emotional support. She found it when an oncology social worker recommended the Hirshberg Center. She received counseling and support there, as did her 16-year-old daughter, who had to deal with losing her father. At her husband's funeral, instead of flowers, Calderon had a donation box and envelopes for donations to the Hirshberg Foundation.
"They really did help us a lot. It's been a great organization to be a part of, and they're kind of like family now," Calderon said. "They have helped with research that is saving lives, and they help people like my family cope with loss and fears about the future, and about our children. They do so much good work at the foundation."
Her experience led Calderon to volunteer for the Hirshberg Foundation and help raise funds for the program, along with her sister, Toni Ontiveros, a breast cancer survivor. Ontiveros runs for the Hirshberg Training team every year in the Los Angeles Marathon to raise awareness and donations.
"We are going to keep fighting this. We are grateful to have the support of the foundation and be part of their community," Calderon said. "We have a passion for the cause. Our hope is that our daughters can have a world without pancreatic cancer being a death sentence.”
Twenty-year pancreatic cancer survivor Roberta Luna, who has a podcast called "Living Hope," said she has been attending the symposium for 11 years.
“It’s important for the information and the resources that we get,” Luna said, “But, really, one of the most important things is the community and getting back together with survivors and their families. Unfortunately, some of them pass and don’t return, but we still have a family community. Even for those coming in for the first time.”
Luna added: “They make everyone feel welcome and that they’re a part of something. That’s how I’ve always felt. Hopefully, we are passing that along as well. Agi and her whole group, they’re just amazing. I think of them as a second family.”
Tina Daunt is the author of this article.