Talk, Test, and Take Control: Living With Pancreatic Cancer

Four months. From the time my father was diagnosed with pancreatic cancer until the time he passed away, it only lasted 4 months. It’s hard to believe that over 21 years have passed since this 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 has been continuous incremental advancements over the past 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 optimistic about what lies ahead and the possibility of dramatically changing patient outcomes.

Like most, I knew very little about pancreatic cancer before my father was diagnosed, but as soon as I heard those words I went online and quickly realized there was a lack of information. , resources and research devoted to the disease. At the time, very little was known about pancreatic cancer – only a handful of researchers were studying it, and the 5-year survival rate was only 4%. I was angry because my father and thousands of other patients had no hope. They were not offered any treatment options and they were sent home to clean up their affairs.

This desperation and anger prompted me to take action, and soon after my father died, I discovered the Pancreatic Cancer Action Network (PanCAN) in 1999, a new organization at thtime. I started 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 watched PanCAN become the driving force to accelerate progress: funding over $ 149 million in pancreatic cancer research to date, supporting patients and their families through our patient service program, and by creating a passionate and energetic community of volunteers and advocates who raise funds and awareness to drive our mission.

I have always been inspired by patient advocates, I have witnessed what patients and their families do for PanCAN in honor of their loved ones to change the future of pancreatic cancer patients, but I had a new awareness of 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 lucky – my diagnosis was at an early stage thanks to breast cancer screening – and after the surgery I was cancer free. I also had genetic testing, which is standard for breast cancer patients, to determine what treatments might be best for me and to understand the risk of certain types of cancer for my family. After this experience, I was incredibly grateful to the breast cancer advocates who came before me who advocated for early detection and better treatments for the disease.

This experience reinforced how important it is to celebrate the incremental progress made each year for patients with pancreatic cancer, because I know that with each new information, we are unraveling the mysteries of this difficult disease.

Due to advances in research, it is now recommended that all pancreatic cancer patients undergo 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 have only had one first-degree relative diagnosed with a disease. pancreatic cancer. It’s important to understand your risk, stay informed, and be your 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 help you understand if you should have a genetic test. PanCAN Patient Services can help you prepare for this conversation.

For people 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 and potentially impact options. treatment of the patient. We also recommend that all pancreatic cancer patients undergo biomarker testing of their tumor tissue through a precision medicine service like PanCAN’s Know Your Tumor to understand if their tumor biology can help. to 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 efforts of PanCAN advocates, there will be a day in the future when someone will be diagnosed early with pancreatic cancer because there is an early detection test and cured because there are new treatments. In the meantime, every day we take action that accelerates the pace of progress. Talk, test and take control. Three simple steps that provide information and empowerment 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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