When new patients call Christine Karlsen's office, they're often shaking. They've just been diagnosed with Barrett's esophagus, a disease that can become cancer. Working on the front lines, hers is the voice patients first hear when they call the center; the face they see at every treatment.
"When they call, they're extremely scared and think they're going to get cancer," said Karlsen, a clinical coordinator in Dr. Brian Reid's lab, which runs the Seattle Barrett's Esophagus Program. "It's my job to talk them down from the ceiling."
Barrett's esophagus is a precancerous condition in the lining of the esophagus, the tube that runs from the mouth to the stomach. It typically hits 10 percent to 20 percent of middle-aged white men who have a history of chronic heartburn or indigestion. People with Barrett's have a 35 percent higher chance of getting cancer than the general population, but the overall risk is small — there's only an estimated 8,000 cases diagnosed in the United States each year.
Nevertheless, helping patients face real fear is part of Karlsen's job, which works something like this: A patient calls, usually from outside Washington, after they've been diagnosed. Follow-up calls include talks of key words in their diagnosis — "high-grade dysplasia," for example, means that they're at a higher risk. Then she helps them figure out if they should come to Fred Hutchinson. While the center's services are free to patients, travel expenses aren't.
"I help them to not make rash decisions — in their panicked state — to come out here when they might not really need to," Karlsen said.
Rissa Sanchez, the research supervisor on the project, said Karlsen is the crucial link between the patients and the doctors. "She's an advocate for the patients and makes sure they understand the data," Sanchez said. "Sometimes they just want to talk to Christine, because she's an excellent listener."
Reid notes that Karlsen's job takes extraordinary patience. "We care about the patients as much as she does," Reid said, "But in the end, she's the one who can spend the most time with them."
Journey to the center
Karlsen has a bachelor's degree in psychology from the University of Washington, which she thought she might never use. Life after college took her in a different direction; to Alaska and an invigorating job as a commercial fishing deckhand. But plans changed. Shortly after starting the job, a diagnosis of multiple sclerosis and growing numbness over her body sent her back to the Seattle area.
Through a friend, she learned about a job at Fred Hutchinson with Dr. Scott Davis, who was looking at the effects of electromagnetic field exposure on melatonin levels in women. For a year and a half, Karlsen helped Davis recruit patients. In 1996, after the project ended, she began her current job with Reid, principal investigator and director of the Seattle Barrett's Esophagus Program.
The program includes a lab team to investigate the genetic and cell-cycle abnormalities that lead to cancer, epidemiologists who study environmental risk factors and dietary intervention researchers. The program also handles nonsurgical patient care.
Reid, a gastroenterologist with a doctorate in genetics, has been studying Barrett's esophagus since 1983. He said he hired Karlsen mainly because of one thing she did during the interview: take copious notes. "She was literally writing down how to do the job, as I said it. I've never seen that done in an interview. It was very compelling," he said.
Today, in addition to working in the Reid lab, Karlsen spends two days a week at the Seattle Cancer Care Alliance, doing everything from preparing patients and their paperwork to making sure their sample biopsies are delivered. She said she knows all of the 300 Barrett's esophagus patients by name.
Thankfully, MS doesn't affect her life much these days. "It's background noise now," said Karlsen, who shows no symptoms of the disease. "I have to take my medication and go to the doctor regularly, and sometimes I have a flare up, but that's it." She credits regular lunchtime yoga classes at the center that improve her strength, flexibility and outlook. "Anytime you do something for yourself, the more you can give," Karlsen said.
She rarely shares her MS story with patients or others, saying she doesn't want people to feel sorry for her. But she knows deep down that her experience innately helps her do her job — emphasizing with people as they go through a crisis.
Giving people power
"I'm good at giving people power," she said. "I'm good at helping them know what's important to look at and helping them come to grips with the ultimate question: 'Is this disease going to kill me?'"
When talking with potential patients, one of the first things Karlsen discusses are the risk factors — and often after talking about their doctor's report, she knows if they're high risk.
"The good news is that most patients with Barrett's esophagus will not develop cancer," she said. In her early days, she admits she got a little wrapped up with her patients. "I used to have to go out and take a walk in the middle of the day, but now, talking to scared patients doesn't freak me out anymore."
"A lot of our patients come here for peace of mind," Karlsen said. She tells the story of a 72-year-old man who has been coming in from Alaska for annual treatments for the past 15 years. "We feel like we're old friends with him." And the best part, she said, is that his high risk for cancer is now reduced.