A new peer mentoring program at UW Health | Carbone Cancer Center helps link pancreatic cancer patients, caretakers and loved ones to people who intimately understand the hardships of navigating that diagnosis.
Members of the Pancreas Cancer Task Force, a volunteer network of cancer survivors and advocates, launched the program to offer support, understanding and resources from their lived experience.
“We’ve been through it. It's overwhelming and I think there’s a lot of comfort that comes in knowing that there are people who truly understand. By listening with that understanding and training, we can help tap into available resources at the right time. Plus, hearing from another patient or caregiver that you are in good hands at UW is calming,” said Jean Scherschel, a task force member whose husband, Allen Dwars, passed away from pancreatic cancer in 2021.
The Pancreas Cancer Task Force not only supports patients and families but also raises crucial funding for Carbone Cancer Center researchers to study new pancreatic cancer treatment approaches. Their family-friendly Roll & Stroll for Pancreas Cancer fundraising event will be held on Aug. 11 at Capital Brewery in Middleton. Attendees can register to run, walk or ride, and dogs are welcome to join.
Pancreatic cancer is relatively rare, but the rates of diagnosis have been slowly increasing over the years. It’s a notoriously difficult cancer to diagnose at the earliest, most treatable stages because most patients will not notice symptoms until the disease has spread throughout the body. The current five-year survival rate is about 13 percent, which has increased from about 9 percent in 2010.
Providing understanding and support
Maggie Rathert, a task force member, was diagnosed with ampullary cancer in 2013. While not a form of pancreatic cancer, this rare disease affects where the pancreas duct and bile duct join to the small intestine and is treated similarly to pancreatic cancer. She underwent the Whipple procedure, a complex surgery used to remove tumors in the pancreas, bile duct and small intestine, as well as chemotherapy.
“I started to think, it sure would be nice to be able to see someone or talk to someone who is going through or has been through what I’m going through,” Rathert said. “I think part of it was feeling so isolated, like I didn’t know if anyone made it through, and I think it might have given me some hope or maybe someone to ask questions.”
Schershel, who joined the task force in 2019 while her husband was still in treatment, found comfort in learning more about the disease and connecting with others who faced it.
The groundwork for a formalized peer mentoring program took months of preparation, including training classes led by physicians, psychologists, nurses and palliative care staff. There are now 10 trained peer mentors who are either cancer survivors or caregivers.
Dr. Noelle LoConte, a gastrointestinal medical oncologist at Carbone, helped structure the training program. They looked at existing similar cancer peer support programs locally and in other states for best practices, including the Patient Survivor Advocates program at the UW Health Breast Center.
“It was important to me to make sure that these peer mentors were well trained not just on like the latest and greatest treatments, but on things like HIPAA (to ensure medical privacy for patients) and how to get help and how to set boundaries for themselves,” LoConte said. “Because patient care is wonderful, but patient care also has a way of sort of creeping into every aspect of your life, and I thought self-preservation for the mentors was important too.”
An educated approach
As a physician, LoConte appreciates how mentors can provide hope to patients, families and caregivers during an incredibly scary time, as well as be an additional source of factual health information to combat misinformation that can be found online.
“It would give me as a provider a great peace of mind to know there's someone, they can go to that I can trust, that has proper training,” she said.
Rathert and Schershel also credited the work of Dr. Sofia Refetoff and Paige Zezulka, of the Pancreas Cancer Outreach Program at Carbone, pancreas cancer nurse navigator Cayla Casey and Dr. Rebecca Minter, a surgeon specializing in pancreaticobiliary surgery who founded the Pancreas Cancer Prevention Clinic.
Rathert and Scherschel said the mentors have focused on making themselves accessible in casual methods, such as phone or video calls, text or email exchanges. They also respect the pace and timing of their mentees, knowing from their own experiences that giving a sense of control to patients and caregivers is important.
“If you have a peer, you can call or text, that feels more relaxed than when you’re gearing up to go to a clinic,” Rathert said. “Just being able to feel like you can casually talk to someone, even if it’s venting, can help.”
