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
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.” The discussion was followed by a series of breakout sessions focusing on specific cancers including colorectal, pancreatic, liver and biliary, and upper gastrointestinal.

Freda Omaswa, from the University of British Columbia, shared her unique account of being a provider as well as a patient with colorectal cancer.

Emphasizing the value of a multidisciplinary approach, she said that her experience with the disease will make her a better doctor.

In another session, Rachel Wong, from the Lombardi Comprehensive Cancer Center, sat with her patient, Ann Hagemann, to talk about nutrition in cancer.

Hagemann had experienced symptoms of gastroesophageal reflux disease (GERD) for a few years, which was treated with over-the-counter medications, before she eventually couldn’t swallow anything. She was diagnosed with a malignant tumor at the gastroesophageal junction between the esophagus and stomach.

While sitting in the waiting room, she noticed a placard on the wall for a dietician.

“I wanted strategies for how I could eat anything at that point,” she said. “Rachel taught me that the chemotherapy’s job was to kill all of the cancer cells. My job was to build strong cells.”

Wong said that every patient is unique in their dietary needs, but she generally advises against fatty or fried foods, acidic foods, flax seeds, and corn, which can cause distress after surgery or treatment.

Many patients with gastrointestinal cancer experience weight loss, and Wong added that she recommends sources of quality calories, including avocados, olive oil and nut butters, which can be easier on the digestive system than nuts.

When asked about the importance of consulting a dietician during the cancer journey, Wong said that making the challenges smaller makes the goals feasible for patients.

“Anybody will have difficulty changing if they don’t understand that they need to make changes,” she said.

The symposium kicked off last Thursday with policy briefing on funding for gastrointestinal cancers and ended with a review of advances in research and treatment of the disease, including immunotherapy and molecular profiling.

On Friday, there was a session on risk factors and treatment options for patients under age 50 with colorectal cancer followed by a discussion between experts, economists, payers and patients regarding defining quality cancer care in terms of health care costs.

Patients flocked around Marshall for pictures and embraces on Saturday as he concluded the symposium.

After considering the information she received from the symposium along with her family’s input, Arnold decided to go forward with chemotherapy.

“I’m going to do it, given the situation that I’m in,” she said. “I have two kids and they’re really young, I’m a healthy person, and I know what normal feels like. I can’t really flip a coin on this.”


* This name has been changed at the survivor's request.
Be the first to discuss this article on CURE's forum. >>
Talk about this article with other patients, caregivers, and advocates in the Colorectal Cancer CURE discussion group.

Related Articles

1
×

Sign In

Not a member? Sign up now!
×

Sign Up

Are you a member? Please Log In