Speak, test, and take control: living with pancreatic cancer


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Four months. It was only 4 months from my father’s diagnosis to his death. It’s hard to believe that more than 21 years have passed since that experience and how creating a world where pancreatic cancer patients can thrive has changed my personal and professional passion. And while we still have a lot to do, there has been continuous, incremental advances over the past 20 years – most recently advances in the role of gene and tumor testing for patients and family members – that give me cause for concern, very hopefully, about what lies ahead and the opportunity to significantly change patient outcomes.

Like most, I knew very little about pancreatic cancer before my father was diagnosed, but as soon as I heard these words I went online and quickly found that there was a lack of information, resources, and research on the disease. Very little was known about pancreatic cancer at the time – only a handful of researchers looked at it, and the 5-year survival rate was only 4%. I was furious that my father and thousands of other patients had lost hope. They were not offered any treatment options and were sent home to sort out their affairs.

This hopelessness and anger inspired me to act, and shortly after my father’s death in 1999, I discovered the Pancreatic Cancer Action Network (PanCAN), a then newly formed organization. I started my journey at 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 PanCAN to be the driving force behind accelerating progress: funding over 149 million missions to date.

Patient advocates have always inspired me to see firsthand what patients and their families are doing for PanCAN in honor of their loved ones to change the future of pancreatic cancer patients, but I had a new insight into the importance of patient advocates when I one . became patient myself.

In 2018 I was diagnosed with breast cancer, which was found on a routine mammogram. I consider myself extremely lucky – my diagnosis was early thanks to breast cancer screening – and after the operation I was cancer free. I also had genetic testing, which is standard for breast cancer patients, to determine which treatments are best for me and to understand my family’s risk for certain types of cancer. After that experience, I was so incredibly grateful to the breast cancer advocates who had come before me urging early detection and better treatment for the disease.

This experience has shown the importance of celebrating incremental advances for pancreatic cancer patients each year, because I know that with every new piece of information, we are unlocking the secrets of this challenging disease.

With advances in research, it is now recommended that all pancreatic cancer patients have genetic testing for hereditary cancer mutations and biomarker tests for their tumor to determine the best treatment options. And for the first time, new guidelines from the National Comprehensive Cancer Network (NCCN) indicate that knowing your genetic risk may be important for family members who have 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 emphasizes the importance of testing for 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 talking to your doctor or genetic counselor to see if you should have a genetic test. PanCAN Patient Services can help you prepare for this interview.

For patients previously diagnosed with pancreatic cancer, PanCAN strongly recommends genetic testing for inherited mutations as soon as possible after diagnosis, which can help educate family members about their own risk and potentially impact patient treatment options. We also recommend that all pancreatic cancer patients have a biomarker test of their tumor tissue performed by a precision medical service such as PanCAN’s Know Your Tumor to understand whether their tumor biology can aid treatment decisions.

Pancreatic cancer patients and their families have more information and opportunities today than they did when my father was diagnosed with the disease. And I have no doubt that with the continued unremitting efforts of PanCAN advocates, there will be a day in the future when someone will be diagnosed with pancreatic cancer early because there is an early detection test and will be cured because there are new treatments. In the meantime, we are taking steps every day that accelerate progress. Speak, test and control. Three Simple Steps to Empower Pancreatic Cancer Patients and Their Families Now. Learn more at pancan.org.

Julie Fleshman is President and CEO of the Pancreatic Cancer Action Network.

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