Patient Stories

Cholangiocarcinoma Survivor

James O'Dell

  • Experienced severe abdominal pain 
  • Diagnosed with cholangiocarcinoma at age 52 in August 2010
  • Treated with surgery at UW Medical Center followed by chemotherapy at local hospital

Jim O’Dell was 52 years old and in severe pain when he went to the emergency room (ER) in August 2010. “The pain in my abdomen was miserable,” he said. “I didn’t want to eat. I couldn’t sit, stand, or lay down. I couldn’t really sleep.”

In the ER, the doctor thought Jim might have pancreatitis. Jim underwent a battery of tests, including a computed tomography (CT) scan. A few hours later, Jim was sent home because the doctor found nothing definitive and his condition did not warrant being admitted to the hospital. But after he’d been home for a few hours, Jim got a call from the ER doctor, who had reviewed the CT scan. The doctor told Jim it showed a mass on the left side of his liver that he should have checked out.

Diagnosing Cancer

Jim went to see a family doctor, who ran more tests to check whether the mass might be caused by cancer that spread from another part of his body. Jim had a colonoscopy, an endoscopy, magnetic resonance imaging (MRI), and a liver biopsy. “They tested me up and down, inside and out,” Jim said. “I was scheduled for a full-body scan next, but I never got it. The doctor told me he didn’t think I had cancer—the results for the serum tumor marker blood test were below the threshold. But the liver biopsy came back and showed I had bile duct cancer, a nasty one. And my doctor told me I had to go see Dr. James Park.” James Park, MD, is an associate professor of hepatobiliary and pancreatic surgical oncology at University of Washington (UW) School of Medicine.

At UW Medical Center, doctors confirmed that Jim had intrahepatic cholangiocarcinoma that was locally contained and showed no evidence of metastasis. Cholangiocarcinoma is a rare, highly lethal cancer that starts in the bile ducts, either inside or outside the liver; Jim’s began in the bile ducts inside the liver. An estimated 2,500 cases are diagnosed each year in the United States. It usually isn’t found until it has progressed and spread. Because Jim’s disease was in one area, “it was amenable to surgery,” according to Dr. Park. “He was one of the lucky 10 to 15 percent.” Patients have a 30 to 35 percent chance of living five years after treatment if they have a cancer of this kind that can be surgically removed (resectable disease).

Jim and his wife, Debbie, have five children, and both have a family history of cancer. “We had decided that if we got cancer, we wouldn’t do chemotherapy and all of that. But when it really happens to you, you rethink that,” Debbie said. One of Jim’s children hadn’t yet graduated from high school. Another had just gotten engaged to be married. “I had a job to do for my family,” Jim said. “Debbie raised the kids, but I earned the money. It was important for me to get this treated—to at least try to be here for my family.”

Treatment Begins in the Operating Room

In a whirlwind, Jim went from the meeting with Dr. Park directly to pre-operative planning. He was scheduled for surgery eight days later, on Oct. 14, 2010.

To treat Jim’s cancer, Dr. Park removed the gall bladder, 45 percent of the liver (the entire left lobe), and the lymph nodes that drain the liver and bile duct. Twelve hours later, Jim was out of bed and walking laps in the hospital hallways. Four days later, he went home. A month later, at the recommendation of his UW Medicine and Seattle Cancer Care Alliance team, Jim began an aggressive course of chemotherapy: cisplatin (Platinol) and gemcitabine hydrochloride (Gemzar), which he received at a hospital closer to his home in Renton, Wash., for six months.

“My whole world turned on its ear,” Jim said. “During chemotherapy, I was able to work from home—they gave me a lot of latitude. But I’d finish work in the afternoon and would have to take a nap. It’s a habit I still have.”

He didn’t feel like eating during those six months but was encouraged not to worry about what he ate, as long as he ate something. “I got into the habit of getting a hamburger at a local restaurant every Friday after chemo,” Jim said. “It’s a bad habit I’m also still doing.”

Mid-way through his chemotherapy, Jim took Debbie to Disneyland for her 50th birthday. “That’s where we always go for vacations,” Debbie said. And when Jim finished his chemotherapy, he and his family celebrated at Disneyland for Halloween.

Life After Cancer

“Everyone said that the doctor from the emergency room went the extra mile by looking over my scan after I left. He saved my life,” Jim said.

After completing chemotherapy, Jim saw Dr. Park every three months for check-ups, which included blood draws and an MRI. After two years, he graduated to visits every six months. “Those trips are a blessing and a curse,” Debbie said, speaking of the anxiety before they know the results of the scans. Thankfully, the scans have always come back clean, and their visits have been more social than medical in nature. “We talk more about when they’re going on their next Disney trip,” Dr. Park says.

There are no known causes of cholangiocarcinoma. Jim continues to live his life like he always has. He said he just takes life as it comes. “I don’t really have a choice to do otherwise,” he said. As for the medical care he received at UW Medical Center, “from start to finish, we felt the doctors knew what they were talking about, so we didn’t question it,” Jim said. “You need to trust your doctors.”