Susan Stewart describes pancreatic cancer as "a disease that needs more hope."
She should know.
When the 57-year-old was diagnosed with stage 4 pancreatic cancer, doctors gave her less than a year to live.
"And that was depending on whether the chemo worked," she said from her North Vancouver home.
That was in January of last year, 14 months ago. Today, the tumour on her pancreas is no longer detectable in a CT scan, an outcome considered remarkable given the disease kills 80 per cent of those diagnosed with it within a year.
It's also why researchers in a new initiative called EPPIC — Enhanced Pancreatic Cancer Profiling for Individualized Care — want to study Stewart, because even though her cancer treatments appear to have worked, no one really knows why.
"We have these extreme responders like her — patients who have a complete response to treatment that's almost unheard of in metastatic cancer," said EPPIC co-lead Dr. David Schaeffer.
"These are the kind of patients we need to study to understand how we can actually tailor treatments to others."
An estimated 5,500 Canadians were diagnosed with pancreatic cancer last year. That number is expected to double by 2030.
"It's really a disease that hasn't got a lot of attention, in part because we didn't see that many cases historically," said Schaeffer. "But now that we're seeing an increase, we can't ignore it."
With $5 million in funding from the Terry Fox Research Institute, a pan-Canadian team of researchers — including the University of B.C.'s Schaeffer and Dr. Daniel Renouf — will fully sequence the DNA and RNA of the tumours of 400 patients in Quebec, Ontario, Alberta and B.C., in hopes of better understanding the disease and defining the best course of treatment.
"This is really the fundamental aspect of EPPIC," said Schaeffer. "In the case of Ms. Stewart, we don't know why [her treatment] worked."
For her part, Stewart is happy to be the poster child for the EPPIC initiative, if only as a way to give back and give hope to others with pancreatic cancer.
Although her chemotherapy treatments continue, she's been able to resume much of her active lifestyle, including a ski trip with her husband and three adult children almost a year after her original diagnosis.
"If you asked me a year ago, would I be able to ski with my family again, I would have said no. But we had an excellent New Year's holiday with my family," she said.
"It was amazing."