Care Beyond the Clinic
The Sidney Kimmel Comprehensive Cancer Center reaches out to patients, families and the community in unexpected ways

Ruth Gresser: "You think you are the only one dealing with this. That's why it's important to hear other people's stories."

It was Saturday morning, Nov. 19, and Ruth Gresser was on her way from her home in Columbia to the Sheraton Hotel in Towson for a day-long symposium, “Living with Colorectal Cancer.” Gresser wasn’t feeling well—it was, after all, only five weeks after her second cancer surgery in six months—but she was eager to be there.

“Sometimes you think you are the only one sitting around dealing with this,” said the 48-year old mother of three. “That’s why it’s important to hear other people’s stories.”

Recognizing the need for patients to connect with each other, as well as to receive the latest information on research and treatment options, the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins has reached out to patients, their families and the community with a variety of events and programs. In an era when patient satisfaction is particularly prized, these efforts might well serve as a model for departments and institutions striving to improve patient care.

In addition to Patient Education Days like the one on colorectal cancer, the SKCCC offers support groups, workshops and dinner programs. Awareness weeks focus on topics like pain, fatigue and clinical trials. At weekly “ask-the-expert” sessions devoted to specific topics ranging from nutrition to lung cancer, anyone—patients, families, visitors and staff—can stop by the lobby of the Weinberg Building to pick up handouts and ask questions of physicians, nurses, social workers and other specialists.

Eden Stotsky embraces Janice Eklund at a patient education day on colorectal cancer. "Cancer is really two different illnesses, one physical, the other emotional. It's important to treat both."

But it is the full-day, patient education symposia—panel presentations and talks book-ended with a continental breakfast and an evening soiree and punctuated by a luncheon—that offer the most emotional and intellectual nourishment to cancer survivors.

Eden Stotsky, health educator at the Colon Cancer Center and a cancer survivor herself, points out that it is “both a treasure and a privilege” for patients to be invited to a panel presentation composed of doctors and surgeons who treat colorectal cancer at Hopkins. But it is just as important for many to hear the echoes of their own experiences from the survivor panel. “Cancer is really two different illnesses, one physical, the other emotional,” says Stotsky, “and it is important to treat both.”

According to SKCCC events coordinator Laura Bakis, the full-day programs started three years ago with a meeting for head and neck cancer survivors. The initial goal was to communicate news about the latest clinical trials and treatments to as many people as possible. The program was so popular that it soon expanded to include other types of cancer and attracted growing numbers of attendees, with some meetings drawing more than 200.

Because the November 2005 “Living with Colorectal Cancer” symposium was just before Thanksgiving, only about 90 people from five states attended. But based on past numbers, Bakis expects future patient education days to reach top capacity. The power of shared stories to comfort and inspire is at the heart of these events.

Jim Seret and Christine Smith: "You never think it's going to be you."

Still, Eklund and her husband, Jim, who also spoke on the panel, have traveled extensively since her initial diagnosis, visiting Cancun and Alaska last year. They’re planning another trip in 2006. “Regardless of the disease,” said Eklund, “it’s important to accomplish everything I want to accomplish.”

But Eklund’s most recent CT and PET scans showed a recurrence, a diagnosis for which she was not prepared. “I used to be the kind of person who planned my life 10 years in advance. Now I’m back to the three-month plan, sometimes just the two-week plan.”

Peg MacGloan, panel moderator, foreground.

Hopkins nurse Christine Smith broke down during her talk as she described being diagnosed during Colon Cancer Month last March after a routine screening. Despite years of working with cancer patients on the GI endoscopy unit, “You never think it’s going to be you,” she said. Like other panelists, what Smith found most wrenching was telling loved ones about her diagnosis. “The last thing a parent wants to hear is that their child is sick, no matter how old that child is,” she pointed out.

Most difficult, Eklund added, was telling her husband and children—one of whom “crashed and burned,” dropping out of college on hearing the news.

A member of the audience then shared his own reaction when learning that his wife of 48 years had been diagnosed with late-stage cancer. “I felt numb,” he said. “There’s not a lot of direction for people who are trying to give support.”

“Hearing about the experiences of other cancer survivors and their families helps you put things into perspective,” said Gordon Cole, who traveled to Baltimore from his home in Greensboro, N.C., to attend “Living with Colorectal Cancer.” “People are crying out for this kind of thing.”

Michelle Woodland Evans: "I usually feel 99.5 percent great. You can live with this disease."

Kimmel Cancer Center events like the daylong symposia, workshops and evening programs are entirely free of charge. To pay for patient education days, events coordinator Bakis solicits funds from pharmaceutical companies and taps charitable donations. “I’m a beggar,” she declares. Would she ever charge attendees? “I would never,” Bakis says decisively, shaking her head. “Our patients have already been through so much.”