New app helps patients navigate surgical journey for rare cancer

By Alica Hall

“I found something.”

It’s been four years since Rick Williamson heard his doctor say those words, but he will never forget the moment. Rick had completed a routine examination of his digestive tract when his doctor asked him to come back in a week for an update.

“I was so anxious, I couldn’t wait for an appointment,” he recalls. “Within a few days, I went back to the doctor’s office and I just waited around until he could see me.”

Rick sat down in the office and braced himself; he knew it wasn’t good news. His doctor took a piece of paper and drew a crude picture of the small intestine — it was cancer.

“I remember just sitting there, trying to process what he was saying,” he says. “I asked him how bad is it and he told me most people are terminal within five years, but you could be gone in less than that.”

Cancer of the duodenum is relatively rare. It has few symptoms, which can go unnoticed until the cancer has advanced to a later stage; making it more difficult to treat. Thankfully Rick had an early diagnosis and was a good candidate for a Whipple procedure, the most effective treatment available for this type of cancer. St. Joe’s is just one of 13 hospitals across Ontario that offers this complex surgery to treat cancer of the liver, pancreas and bile ducts.

Within a few weeks, Rick came to St. Joe’s to meet Dr. Shiva Jayaraman, a surgeon who specializes in the Whipple procedure. Rick’s surgery was booked for two weeks after their meeting; the most difficult two weeks of his life.

“I couldn’t eat solid food for four months after the surgery, but the hardest part of this experience was getting mentally ready,” he recalls. “You have one meeting with your surgeon and then you’re in the operating room – you don’t really feel prepared.”

To ease his fears, Rick tried to search for information online. He found inspiration reading stories of cancer survivors and bloggers, but he still wasn’t sure what to expect in his own journey. As an educator and a surgeon, Dr. Jayaraman knows how difficult it is for patients to find information they can trust.

“There’s a lot of medical information out there that is focused on selling services to people,” Dr. Jayaraman says. “The problem we’re facing today isn’t a lack of information, but rather the quality and relevance of what’s available.”

This challenge would inspire Dr. Jayaraman to find a solution. He had an idea to develop an app that could provide reliable information about the Whipple procedure for patients and their loved ones.

“I’ve always been interested in developing new ways to educate the residents and students I work with as well as my patients,” he says. “A free web-based app means anyone can access it, patients can use it to see if they’re on-track in their recovery and caregivers will better understand what’s happening to their loved ones.”

Dr. Jayaraman led a team of students, developers and current and former patients for over six months to develop, the web-based app walks patients through the surgical journey from beginning to end. Rick financially supported the development of the app. The website launched in April and has already been visited by thousands of people in the US and Canada.

“This is one of the ways, as physicians, we level the playing field. In order to empower patients to become more involved in their healing process we have to educate them about what’s happening in their bodies,” says Dr. Jayaraman. “My goal is to ensure patients have useful, evidence-based information that prepares them for surgery.”

Alicia Hall is a Communications Associate at St. Joseph’s Health Centre, Toronto.