Pancreatic Cancer – Saying the ‘C’ Word
Remember the days when we avoided using the word “cancer,” especially around people who suffered with the disease? For whatever mythical reasons, we believed throwing those six letters into the universe made the situation even more difficult. We certainly didn’t want to remind people they had the dreaded condition and, more than likely, wouldn’t be around much longer. It was almost as if we also feared it was contagious.
What we actually denied was open, sincere support for the cancer patient, a confident support that encourages hope. We also denied awareness of the disease, an understanding of the elements needed to fight and to conquer it. We denied shining the light of day on it so the needed research for cures could
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Denial is no longer the case, especially for the people associated with pancreatic cancer, which is one of the deadliest forms of the disease.
And the last thing the Pancreatic Cancer Action Network wants is silence.
It all began in 1999 as the lone effort of Pamela Acosta Marquardt, who lost her mother to the disease. The vision for PanCAN (Pancreatic Cancer Action Network) was to create a world where all people afflicted with pancreatic cancer could not just survive but thrive. The mission is to use bold, identifiable action to improve the lives of all those impacted by the condition. The goals supporting the mission include pushing scientific research forward, building community, sharing knowledge, and advocating for patients.
What began as the dedicated effort of one person more than two decades ago, is now a nationwide movement spread throughout the United States that tackles the disease from every possible angle.
“We have some of the most dedicated and passionate volunteers on the planet,” Angeli Bateman, Volunteer Affiliate Chair, Dallas/Fort Worth Affiliate, said. “Everything is done with a positive, celebratory note.
“When PanCAN first began, the pancreatic survival rate was a little less than four percent. That’s pretty grim. Today, the past-five years survival rate is 13 percent. That may not sound like much progress in 25 years, but it changes an entire lifetime for that 13 percent.
“Our goal is to push that survival rate much, much higher. We plan to do that through the multi-disciplined approach we use to reach patients. Pancreatic cancer is NOT an automatic death sentence.”
Keila Revell, the Media Chair volunteer, has dubbed the current campaign Change the Course. “We’re working toward that world where pancreatic patients can thrive,” she said. “November 21 is World Pancreatic Cancer Day and we want to raise the awareness level of the disease as high as possible.
“One of our most important jobs is to empower the people to become their own advocates so they can fight for themselves. The symptoms of pancreatic cancer can be extremely vague, which means we strive to arm the people with information and resources. This includes ways to recognize signs and symptoms, facts about the disease and how it works. It’s often misdiagnosed for sicknesses such as Type 2 diabetes. The more times it’s diagnosed incorrectly, the later accurate treatment begins.”
“Our volunteers are called upon to do some amazing things,” Keila said. “They may need to contact a congressperson because a funding opportunity has arisen that could benefit our research efforts.
We react fast because we don’t want to miss any chances. Our volunteers also speak to organizations and clubs about our fight against pancreatic cancer.
“We want people to know they can call us and request free printed materials and resources. PanCAN’s Patient Services provides these resources and so much more including how to help maneuver through insurance claims and forms.”
PANCan also pursues partnerships with institutions such as UT Southwestern. “Once again, this is work usually done by our volunteers. We’re so lucky with our volunteers. They’re 100 percent dedicated, and they’re held together by a beautiful bond,” Angeli said.
PurpleStride is PanCAN’s biggest fundraiser, with nearly 60 walks across the nation on the last Saturday in April.
If you have been affected by pancreatic cancer and would like information and resources please contact PanCAN Patient Services at pancan.org or the local PanCAN chapter of you’d like to get involved.