Carole Seigel began advocating for pancreatic cancer patients, research, and funding after her husband, Michael, passed away from the disease in 2001 at the age of 60 after 40 years of marriage. Michael was diagnosed with unresectable pancreatic cancer at the age of 58. This diagnosis generally has a poor prognosis of 6-months’ to 1-year survivability. Michael lived for another 27 months, which was a testament to his courage and to the benefits of having access to a comprehensive cancer center that, in addition to offering participation in clinical trials, extended palliative and supportive care that ensured quality of life in a very difficult time. It was during this period that Carole realized she wanted to devote her life to others who were experiencing the challenges of pancreatic cancer diagnosis and treatment.
In an effort to improve her scientific understanding of pancreatic cancer diagnosis and progression, Carole began to ask the scientists she was meeting in the course of her advocacy work to explain their research to her in lay terms. She says not one scientist has ever refused. Carole also enrolled in a medical terminology class at Massachusetts General Hospital (MGH) to enhance her understanding of the subject matter. She also attended conferences and meetings to learn about the exciting areas that research investigators are exploring in pancreatic cancer. Such opportunities helped bolster Carole’s determination to continue learning even more about pancreatic cancer. After embarking with her husband on his journey, she began to understand that the needs of each patient are unique, often requiring different approaches to treatment. This understanding, paired with knowledge about pancreatic cancer, is critical to helping families make important clinical decisions. Carole’s vision of her advocacy work gradually took shape: To create a space where pancreatic cancer healthcare workers can effectively educate patients, their families, and caregivers not familiar with the disease to empower them to advocate for the best care available.
Among Carole’s notable accomplishments were being part of the team that founded the MGH Cancer Center’s Patient and Family Advisory Council and also joining their Quality and Safety Committee as a member. She has also participated in many impactful advocacy organizations. Carole was selected to be a reviewer for “Biomarkers in Cancer, An Introductory Guide for Advocates,” a publication released by the Research Advocacy Network and designed to educate patient advocates about biomarkers. Since 2000 Carole has also worked as a patient advocate for the H.O.P.E. program, which provides patient education and support programs, and she serves as an advocacy champion for the American Society of Clinical Oncology (ASCO), where she sits on several committees fighting for supportive/palliative care and improving physician/patient communication. Now semi-retired, Carole serves as a healthcare consultant in management and strategic planning. She has spent almost two decades as a strong advocate for pancreatic cancer research and public awareness of this deadly disease. In that time Carole has become a voice for those patients whose cancer is so acute and severe that they cannot speak for themselves. She is still using her voice to ensure patients have access to clinical trials, as well as speaking out on issues of accrual, informed consent, tissue collection, and diversity. Having faced myriad challenges trying to secure the best possible care for her husband, Carole strives to fight for every pancreatic cancer patient to receive the highest level of care and support that can be obtained. As a leader in pancreatic cancer advocacy, this has become her life’s mission.
The recently established Pancreatic Cancer Research Program (PCARP) asked Carole, in her capacity as an active member of the National Pancreas Foundation, to join other pancreatic cancer patient advocates, researchers, and clinicians to be part of the FY20 Programmatic Panel. The panel collectively advises the program on optimal approaches to funding and advancing pancreatic cancer research. PCARP and many other advocacy organizations have joined Carole in the fight to promote the best care patients can receive. Together they continue to raise awareness of a research area that is underfunded compared to other more common cancers.
Last updated Thursday, November 19, 2020