Scott Nelson will never forget the first weekend following his pancreatic cancer diagnosis.
On an otherwise routine Friday in 2004, an ultrasound technician found an tumor on Scott’s pancreas. The diagnosis was immediate, and the outlook was grim: the five-year survival rate for pancreatic cancer in the United States hovers around six percent.
Scott’s primary care physician tried to line him up for an immediate appointment, but no appointments were available until the following Monday. Scott went home, feeling shocked, isolated and confused.
Once home, he tried desperately to find useful pancreatic cancer facts online, but the Internet was awash with dubious or contradictory information.
“After about 12 hours, I just shut the computer off and thought, ‘Oh my God,’” Scott said. “I was totally alone, and I had no information and no idea what to look for. It was the worst weekend of my life.”
But the tumor had encircled one of Scott’s blood vessels near the pancreas. Before the surgery could take place, doctors would have to use radiation and chemotherapy to shrink the tumor.
Sielaff knew of an active clinical trial, which he co-wrote, that he thought would be the best option for Scott. He sent Scott to University of Minnesota Health Cancer Care Hematologist/Oncologist Edward Greeno, MD. Greeno is a recognized expert in treating gastrointestinal cancers and is the executive medical director of University of Minnesota Health Cancer Care.
Greeno enrolled Scott in the clinical trial involving three types of chemotherapy and high doses of radiation, spread out over an eight-week span. The trial worked: After eight weeks, his tumor had shrunk and tests came back indicating the surgery could go forward.
“Clinical trials are important for a variety of reasons. A trial gives an individual facing cancer access to state-of-the-art therapies they may not find elsewhere,” Greeno said. “From the perspective of the community of cancer patients, enrollment of patients in a clinical trial helps advance our knowledge.”
Following the success of the trial, Dr. Sielaff removed the tumor, a third of Scott’s pancreas, a portion of his small intestine and his gall bladder. Scott was 50 years old at the time of the surgery. After another stint of high-dose chemotherapy and radiation, Scott’s care team declared him cancer free.
“I wanted to give back to all the people who gave to me, and try to make that experience less difficult for other patients and families,” Scott said. “If I could find ways to make it less terrible, less daunting—what better cause is there?”
Scott became a patient advocate and volunteer for the Pancreatic Cancer Action Network. His job? To answer the phone when other pancreatic cancer patients called seeking guidance, support or information.
“The real thing I can give is hope,” Scott said. “They know what the numbers are. Being able to talk to somebody who went through what they’re going through and survived makes them think, ‘OK, if he made it, I can make it, too.’”
But he didn’t stop there.
Scott took advantage of a volunteer leave program offered by his employer, Wells Fargo, and spent three months of paid leave working with University of Minnesota Cancer Care to further improve our patients’ experience.
In this role, he worked with our administrative and care teams to identify important information and resources our patients will need, like access to support groups and information about our supplemental programs like nutrition and physical therapy. He also helped refine our ability to deliver this information to patients and caregivers when they need it most.
“Not only did Mr. Nelson help us advance our knowledge through the clinical trial, he has also helped us take better care of all our cancer patients by sharing his wisdom, his energy and his personal experiences with us,” Greeno said.
“You feel so isolated when you get this diagnosis,” Scott said. “You’re on this highway of life, going full speed, when all of sudden, you get a diagnosis and a black curtain drops in your lane and you’re forced to stop. But you’re not in this alone; there is a whole community fighting this with you.”