By Karen Garloch
The Charlotte Observer
February 15, 2009
At dinner recently, Ken Chelcun swallowed a bigger bite of his taco than he should have and suffered a little digestive distress.
“My food went down into my stomach too fast,” he explained to his family.
“But Dad,” said 8-year-old Dane, “you don’t have a stomach.”
It’s true.
Chelcun hasn’t had a stomach since Dec. 5.
That’s when the perfectly healthy 49-year-old from Huntersville had it surgically removed, so he wouldn’t get the stomach cancer that killed his mother and brother.
To remove a stomach before getting sick might sound drastic to some.
For Chelcun, the decision was easy.
“I never felt I had a choice,” said the systems analyst with Bank of America. “It was all about when.”
The discussion started after Chelcun’s older brother, Greg, of Wisconsin, was diagnosed with advanced stomach cancer in September 2007. He was 56.
That news stirred memories of their mother’s death, also from advanced stomach cancer, in 1982 when she was 52.
With two cases of stomach cancer in the family, the Chelcuns’ sister, Karen Chelcun Schreiber, worried the disease could be inherited.
From the Internet, she found reports of a syndrome called hereditary diffuse gastric cancer, caused by a genetic mutation that was discovered by researchers in New Zealand in the 1990s.
The disease is rare; about 100 families in the world are believed to have the mutation. But a genetic test can identify who is at risk.
Both Schreiber and Ken Chelcun took their concerns to their doctors, who recommended screening tests – colonoscopy and endoscopy – and referred them to genetic counselors. But the counselors said Greg should be tested first. If he had the mutation, their chance of having it would be 50-50.
Greg’s blood test came back positive.
That meant their mother probably had the mutation. And others in the family could have it, too.
Schreiber, 51, also from Wisconsin, was next to get tested, and she was positive.
It meant she had an 83 percent risk of getting the cancer. For men, the risk is 67 percent.
She had seen enough of stomach cancer to know that screening tests don’t detect the disease in early stages. And she had read enough about available treatments to know what she had to do.
On Sept. 12, a year after Greg’s diagnosis, Schreiber had her stomach removed at Massachusetts General Hospital in Boston. She chose Dr. Sam Yoon, one of a handful of U.S. surgeons who specialize in stomach cancer and treat patients with the genetic mutation. Insurance covered most of the $75,000 bill.
When pathologists examined Schreiber’s stomach tissue after the surgery, they found she already had the beginnings of cancer.
By that time, Ken Chelcun had also taken the test.
And he also carried the rare mutation.
So on Dec. 5, with insurance coverage preapproved, he followed his sister’s lead and became Yoon’s eighth patient since January 2006 to have a gastrectomy – total stomach removal – as a preventive measure.
It was a good thing. Ken’s stomach also showed microscopic signs of cancer.
It would have taken years to be detected, and by that time it would have been too late.
“Now he doesn’t have to worry about getting gastric cancer,” Yoon said. “His risk is zero. He can move on with his life and worry about other things.”
Learning to eat again
The stomach’s main jobs are to break food down into small pieces and store it before it moves to the remainder of the digestive tract.
Fortunately, you can live without one.
In the surgery, Yoon cut out Ken’s stomach and connected his esophagus directly to his small intestine, which would take over the stomach’s storage function and slow the movement of food so it would have more time to digest.
The delicate operation took about three hours and left a seven-inch vertical scar down the middle of Ken’s chest. He and his sister joke that it has become the Chelcun “family crest.”
Like Ken and his sister, all of Yoon’s patients have been generally healthy and young, ranging in age from 38 to 51. And all have lost family members to stomach cancer.
After surgery, the challenge is learning to eat again as normally as possible.
“Initially you have to graze like a cow,” surgeon Yoon said. “Drink small amounts. Eat small amounts constantly through the day. Your body essentially adapts. Most people don’t get to the point where they can eat three large meals a day.”
For the first five days after surgery, Ken Chelcun ate nothing – not even an ice chip – as he waited for his new plumbing system to heal.
On the fifth day, he took the “swallow test,” drinking a liquid laced with a dye to show whether there were any leaks.
When he passed that test, he began having broth and Jello.
Over the next five weeks, he added soft foods – from mashed potatoes and yogurt to macaroni and cheese and chicken. At first, he could take only a bite or two, and chew thoroughly, before pausing. He could feel it going down inside his chest.
Slowly, he’s learning how long to chew and how much he can consume at one sitting.
“If I ate a little too fast,” Ken said, “I’d have to put my head in my hands and take some deep breaths and kind of pull it together. It’s like it was getting stuck, not going all the way down.”
No more hunger pangs
Ten weeks later, the absence of Ken’s stomach has become the stuff of jokes.
At dinner one night last week, he ate the same chicken-broccoli casserole as his wife, Suzie, and their three sons, Luke, 10, Dane, 8, and Nash, 5. The portion on his plate was a normal size, but he chewed each bite very slowly.
“That leaves more for me,” said Luke, who asked for a second helping.
When the subject turned to Ken’s upcoming 50th birthday, he shrugged it off with a jab at his wife: “I’m in better shape than mom.”
“At least I have all my organs,” Suzie quipped.
From his sister’s experience, Ken knew he would have to avoid sweets. Too much sugar can lead to diarrhea.
She also told him he’d have to remind himself to eat. Without a stomach, Ken doesn’t feel hunger pains anymore.
Instead, he nibbles throughout the day on sugar-free ice pops, trail mix and yogurt. He allows himself occasional bites of no-sugar-added ice cream, and a cookie here and there. “It’s pretty much figuring out what works and what doesn’t work,” he said.
Despite Ken’s hopes, beer doesn’t agree with his new gut. But he does enjoy a glass of wine, and he drinks one or two cups of coffee in the morning. For reasons he doesn’t understand, sipping plain water causes discomfort. “Flavored water goes down better.”
To get enough nutrients, he takes a multivitamin, and he’ll also be getting a monthly injection of vitamin B-12. Without a stomach, he can’t absorb B-12 from food.
Eating this way has caused both Ken and his sister to lose weight, unintentionally. Before surgery, Ken purposely bulked up to 170 pounds from his normal 160. His weight has now stabilized at 150.
Their nephew is next
When they first looked into the idea of such radical surgery, none of the Chelcuns knew you could live without a stomach. Today, they’re thankful for the option.
“This has really been a gift,” said Suzie Chelcun. “It could have been an organ that you can’t do without. … We sort of have power over the cancer, where a lot of people don’t have that option.”
The Chelcuns’ mother, Elaine, didn’t have a choice.
Neither did brother Greg, whose cancer had spread to his spleen and colon by the time it was discovered.
He died a week ago today, 17 months after his diagnosis.
“It was important to him that everyone get tested,” Ken said.
For Greg’s middle-aged siblings, the decision to have surgery was “pretty much a no-brainer,” Ken said.
But for the next generation, the decision is tougher. They are learning about their inherited health risks at a younger age than their parents.
But deciding when to fit such a drastic surgery into their lives is not easy.
Ken and Suzie’s sons haven’t had the test; geneticists advised them to wait until age 18.
But Greg’s two adult children and one of Karen’s two adult sons have been tested for the gene.
All three are positive.
But only one has a definite plan.
Greg’s son, Brian, 26, is scheduled for surgery Thursday in Boston.
His stomach will be removed by the same surgeon who operated on his Aunt Karen and Uncle Ken.
The family joke is that they should ask for a deal – Buy two, get one free.
