Four months. From the time my dad was diagnosed with pancreatic cancer to the time that he died was just 4 months. It’s hard to believe that more than 21 years have passed since that experience and how it changed my personal and professional passion to create a world where pancreatic cancer patients can thrive. And while we still have a lot of work to do, there have been continuous incremental advances over the last 20 years — most recently, advancements in the role of genetic and tumor testing for patients and family members — that give me reason to be very hopeful about what lies ahead and the opportunity to significantly change patient outcomes.
Like most, I knew very little about pancreatic cancer before my father’s diagnosis, but as soon as I heard those words, I went online and quickly learned there was a lack of information, resources, and research devoted to the disease. Back then, very little was known about pancreatic cancer — only a handful of researchers were studying it and the 5-year survival rate was just 4%. I was angry that my dad and thousands of other patients were given no hope. They were offered no treatment options and sent home to get their affairs in order.
That hopelessness and anger inspired me to take action, and soon after my father died, I discovered the Pancreatic Cancer Action Network (PanCAN) in 1999, a newly formed organization at the time. I began my journey with PanCAN as a volunteer and was hired as the organization’s first full-time employee in 2000. In my role as president and CEO, I am honored to have the opportunity to work with the pancreatic cancer community and I have watched PanCAN become the driving force for accelerating progress: funding over $149M in pancreatic cancer research to date, supporting patients and their families through our Patient Services program, and building a passionate and energetic community of volunteers and advocates who are raising funds and awareness to drive our mission.
I have always been inspired by patient advocates, witnessing firsthand what patients and their families do for PanCAN in honor of their loved ones to change the future for pancreatic cancer patients, but I had a newfound realization about the importance of patient advocates when I became a patient myself.
In 2018, I was diagnosed with breast cancer, discovered during a routine mammogram. I consider myself exceptionally fortunate — my diagnosis was early-stage thanks to breast cancer screening — and after surgery, I was cancer-free. I also had genetic testing done, which is standard for breast cancer patients, to determine what treatments might be best for me and to understand my family’s risk of certain kinds of cancer. After that experience, I was so incredibly grateful to the breast cancer advocates who had come before me and pushed for early detection and better treatments for the disease.
This experience reinforced how important it is to celebrate the incremental advances being made every year for pancreatic cancer patients because I know with each piece of new information, we unlock the mysteries of this challenging disease.
Due to advances in research, it is now recommended that all pancreatic cancer patients get genetic testing for inherited cancer mutations and biomarker testing of their tumor to determine their best treatment options. And for the first time, new guidelines released by the National Comprehensive Cancer Network (NCCN) indicate that knowing your genetic risk may be important for family members who’ve had only one first-degree relative diagnosed with pancreatic cancer. It is important to understand your risk, stay informed, and be your own best advocate.
November is Pancreatic Cancer Awareness Month and PanCAN is emphasizing the importance of testing for both patients and their families. Knowledge is power, and we want people to take three simple steps that could save their lives: talk, test, and take control.
For first-degree relatives of pancreatic cancer patients, we recommend that you talk to your doctor or genetic counselor to help you understand whether you should have genetic testing. PanCAN Patient Services can help you prepare for that conversation.
For those already diagnosed with pancreatic cancer, PanCAN strongly recommends genetic testing for inherited mutations as soon as possible after diagnosis, which can help inform family members of their own risk as well as potentially impact the patient’s treatment options. We also recommend that all pancreatic cancer patients receive biomarker testing of their tumor tissue through a precision medicine service like PanCAN’s Know Your Tumor to understand if their tumor biology may help inform treatment decisions.
Today, pancreatic cancer patients and their families have more information and options than when my father was diagnosed with the disease. And I have no doubt that with the continued relentless effort of PanCAN advocates, there will be a day in the future when someone is diagnosed with pancreatic cancer early because there is an early detection test and cured because there are new treatments. In the meantime, each day we are taking steps that accelerate the rate of progress. Talk, test, and take control. Three simple steps that provide information and empowerment now for pancreatic cancer patients and their families. Learn more at pancan.org.
Julie Fleshman is president and CEO of the Pancreatic Cancer Action Network.
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