Woman says you can live without a stomach
By PAUL SWIECH
LEROY, Ill. — When Laura Willis was told that her best chance to virtually eliminate her high risk of stomach cancer was to have her stomach surgically removed, she asked “You can live without a stomach?”
“‘You’re gonna take out what?'” her husband, Joe, recalled asking. “How does that happen? Can you live without a stomach?”
Not only is it possible, but it is the best option for survival for people like Laura, 34, who carry a rare inherited gene that puts them at substantial risk of stomach cancer, said Dr. Sonia Kupfer, assistant professor of medicine and director of the gastrointestinal cancer risk and prevention clinic at University of Chicago Medicine. That’s where Laura had a total gastrectomy, or surgical removal of the stomach, on Jan. 12.
But life without a stomach for Laura has meant a delicate balance of measuring the amount of food she eats, avoiding certain foods, focusing on others and eating smaller portions while eating more frequently.
She is trying to avoid abdominal cramps and diarrhea while maintaining her energy.
“We’ve found out, yeah, people can live without a stomach,” Joe said. “But it’s going to be different.”
Laura lives with Joe, 37, and their children, Isaiah, 5, and Isabella.
Laura is the business manager and an EMT for LeRoy Emergency Ambulance Service. Joe is the youth pastor at LeRoy Christian Church and a driver for LeRoy ambulance.
“Overall, I’ve been pretty healthy,” Laura said. “I was hardly ever sick. But I’ve always had GI (gastrointestinal) issues.”
Beginning in high school, when she’d eat certain foods, she’d have diarrhea.
She was diagnosed with irritable bowel syndrome, took medicine but it didn’t help much. “I learned to live with it and avoid certain foods.”
Meanwhile, when her father, Frank Anderson of Virginia, Ill., had his colonoscopy, non-cancerous polyps were detected. In April 2017, a doctor decided to follow up with genetic testing.
The conclusion was Anderson had inherited mutations in the E-cadherin gene (CDH1).
“If you have that mutation, your risk of developing stomach cancer is 70 percent for men and 56 percent for women by age 80,” Kupfer said. “That’s huge.”
In addition, women who have the gene have a 42 percent risk of developing breast cancer, Kupfer said.
Anderson was referred to University of Chicago Medicine, where he was diagnosed with hereditary diffused gastric cancer (HDGC) caused by the CDH1 gene mutation.
HDGC represents less than 1 percent of stomach cancers, Kupfer said.
Because Anderson had cancer, the treatment was total gastrectomy on June 1. That meant his stomach was removed and his esophagus was attached to his small intestines.
Because the gene mutation is inherited, Anderson’s siblings, children, nieces and nephews began genetic testing. Looking back, there has been a lot of cancer in the family, Laura said.
In June, genetic testing revealed that Laura carried the gene.
She met with Kupfer and a geneticist in August and found that her options were total gastrectomy or endoscopy every six months.
Endoscopy means inserting a tube with a camera and light into the digestive tract. But endoscopies are unreliable in detecting diffuse gastric cancer because the cells are isolated or in small clusters in the lining of the stomach.
“By the time it (cancer) shows up in an endoscopy, it often times is too late,” Laura learned.
But she emphasized that gastrectomy is for people with established cancer and for people at high risk for developing cancer because they have CDH1.
Laura was told there was an 83 to 87 percent chance that she would develop HDGC by age 40. “Knowing that endoscopy was unreliable, we decided on total gastrectomy and decided the sooner we had it done, the better,” Laura said.
The 6½-hour surgery was performed Jan. 12 at University of Chicago Medicine.
“The first few days, there was a lot of pain,” Laura said. “By day four, that night, I started to feel a lot better.”