How Mayo Clinic might tip the odds for patients with rare cancer

ROCHESTER — When Chris Ingraham was given a diagnosis of a rare liver cancer, the 42-year-old father of three and journalist did what he’s good at — he looked at the numbers.

They didn’t look good.

Before Ingraham headed to a Fargo hospital in August with symptoms of jaundice, he was an active, healthy man. He and his family had just returned from a trip to the Pacific Northwest which included plenty of physical activity and hiking. After he came home, he began having trouble sleeping. His appetite was down. He itched, but attributed that to a possible sunburn.

During an evening at home, he rolled his eyes at something his wife said. She noticed the whites of his eyes were yellow, a symptom of jaundice that indicates diminished liver function.

Ingraham was initially diagnosed with gallstones. Tests of his bile ducts were negative for cancer. However, a bile duct specialist, who happened to be in the hospital while Ingraham was there, reviewed Ingraham’s case. By the end of the day, radiology scans verified masses on his bile ducts.

“We went, in one day, from ‘You’re OK to go home’ to ‘You have a rare liver cancer,’” Ingraham said, adding he understands the initial misdiagnosis.

“I’m a data guy, and I understand where the doctors are coming from,” he said. “In probably 99 out of 100 people who come in like me with my symptoms, it’s a gallstone.”

However, in Ingraham’s case it wasn’t. He has cholangiocarcinoma, a rare type of cancer that forms in and around liver bile ducts. The cancer escapes most screenings and can be elusive on scans as it grows along the bile ducts mimicking their shape, said Dr. Sumera I. Ilyas, a researcher and cholangiocarcinoma expert at Mayo Clinic.

“Initially, the tremors tend to grow longitudinally along the bile ducts,” Ilyas said. Often CAT scans and MRIs don’t show anything abnormal. When the cancer is advanced, it blocks the bile ducts.

Without treatment, the five-year survival rate for cholangiocarcinoma patients is around 10%.

In most cases of cholangiocarcinoma, by the time symptoms occur, the cancer has grown too big for surgery.

“It’s called a silent cancer,” Ingraham said. “You tend not to get many symptoms until it’s too late to do something about it.”

That’s where Ingraham was at. His symptoms of jaundice were a sign the cancer was advanced enough that it was squeezing closed his liver’s bile ducts.

Currently, doctors say a liver transplant is his best option.

Contributed / Mayo Clinic

A few years ago, that option was off the table for cholangiocarcinoma patients. Until new protocols developed by Mayo Clinic were adopted, outcomes for such transplants were poor, specialists said.

“By poor, I mean five-year survival less than 20%,” Ilyas said.

That was based on a study of 200 cholangiocarcinoma patients through 1991.

However, a study of 200 cholangiocarcinoma liver transplant patients following the Mayo protocols over the last 20 years has yielded a five-year survival rate of 65%.

The protocols are a combination of screening and treatment prior to transplant.

The five-year survival rate is slightly higher for the specific type of cholangiocarcinoma Ingraham has, Ilyas said.

Ingraham is currently being treated at Mayo Clinic. Stents in his liver have helped his liver function again. He’s being evaluated by Mayo specialists for a potential liver transplant.

Ingraham said he’s trying to balance his reactions with some research and analysis.

“For whatever reason, I find it therapeutic to look at the numbers and look at the data,” he said. “It’s good to be able to know how to dig up good information because there’s a lot of bad information out there as well.”

That research has also helped him focus his thoughts since his diagnosis.

“Something like this, it really does kind of rewire your brain,” he said. “You’re so used to thinking long-term that whatever good things or headaches you have in life, that they’ll always be there.”

Now he has something immediate to fight against and the long-term concerns no longer feel as urgent, he said.

“I was less upset about the likelihood of cancer than, Jesus, how do I explain this to my kids,” he said of telling his twins, who are 9 years old, and his 5-year-old.

Being open and public about the cancer has helped him cope in his usual ways.

“Humor and dark jokes,” he said, adding neighbors and community members have been helpful as his family learned of the diagnosis.

Ingraham added that he's hopeful to get the OK for a liver transplant but understand the diligence specialists are going through right now.

“The waiting is very challenging,” he said, adding it’s also an ordeal for his family.

“Whatever happens to me, this is happening to them too,” he said. “They’re the ones sitting around waiting.”