Information Opens Doors for Patients at Ruesch Center Symposium

Exactly one month after an oncologist told her that there was an 80 percent chance she was free of colon cancer, Taylor Arnold sat in front of a panel of patients, survivors and doctors, wondering why she was there.
BY KELLY JOHNSON @OncKelly
PUBLISHED: DECEMBER 08, 2015
John Marshall (right) with a panel during the live taping of CURE Connections.

John Marshall (right) with a panel during the live taping of CURE Connections.

Exactly one month after an oncologist told her that there was an 80 percent chance she was free of colon cancer, Taylor Arnold* sat in front of a panel of patients, survivors and doctors, wondering why she was there.

“It’s weird because here I am at a cancer conference and I don’t feel sick,” she said. “It’s really hard to think of myself as sick. I don’t want to think of myself as only 80 percent.”

Arnold was diagnosed with stage 2 colorectal cancer and underwent surgery on November 5 to remove a portion of her colon. Last week, her oncologist told her that there is a 20 percent chance of recurrence and gave her the option to receive chemotherapy — a choice that she hoped the Sixth Annual Ruesch Center Symposium would help her make.

“I have to make the decision this week,” she said. “My oncologist said that this was going to be very informative and I could meet some other patients that went through the same decision-making process and went through the same chemo.”

Entering through the giant, inflatable colon, dozens of patients, caregivers, family member and providers gathered at the Georgetown University Hotel and Conference Center in Washington, DC, on December 5 for the fourth and final part of the symposium, “Fighting a Smarter War Against Cancer.”

The patient symposium featured a live taping of CURE Connections panel discussions covering support, disease-specific sessions, nutrition and more.

With many of his own patients in the audience, John Marshall began the first discussion on the importance of building a support system, or as he described it, a “village.”

“You’re walking through this mirror and now you’re on the other side. You’re in this new club. There are a lot of people in the club, but you never thought that you’d be in the club,” said Marshall, the director of Ruesch Center for the Cure of Gastrointestinal Cancers. “There is entirely new language, priorities, and your life just changes at that moment.”

Three patient advocates with varying types and stages of gastrointestinal cancers described their experiences during the appointment of their primary diagnoses.

“In that initial moment after diagnosis, for me, I didn’t want information,” Alli Macken said. “I was in a fog for at least the first week.”

For Arnold, she said that information has been the most important part of her process.

“Those first few hours in the emergency room when I didn’t know anything were the scariest of my life,” she recalled. “But once the information started flowing — even though it wasn’t necessarily good information — I felt like I was in control and it calmed me down.”

After the other patients gave their personal accounts, Marshall reaffirmed that physicians struggle with delivering the news of a cancer diagnosis as well.

“We don't like giving bad news,” he said. “We personally have to get prepared, too.”

Marshall added that while studies show that having a positive attitude may reduce side effects and improve outcomes, providers shouldn’t push patients to feel happy.

“It’s important, and we do try to emphasize positive thinking, but there are some people who just feel bad,” he said. “We have to forgive those people who find themselves in a pit sometimes. I don’t want people to think it’s their fault when they’re down.”

Talk about this article with other patients, caregivers, and advocates in the Colorectal Cancer CURE discussion group.
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