LeROY — 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."
"If I wouldn't have had this surgery done, it could have developed into a cancer that could have killed me," Laura said as she and Joe played with their daughter, Isabella, 2, in their LeRoy home.
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.
"Screening is very difficult for stomach cancer," Kupfer said. "That's why the main treatment is removal of the stomach."
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."
Gradually food was reintroduced, starting with a clear liquid diet, then soft foods. She was back home by day six and off pain medicine less than two weeks after surgery.
The stomach stores food and begins digestion before food enters the small intestine, Kupfer said. That's why people without a stomach must eat small amounts at a time and chew their food thoroughly.
Not doing that results in "dumping syndrome," or rapid emptying of food into the intestines, followed by dizziness, sweating and diarrhea, Kupfer said.
"The main place where nutrients are absorbed is the small intestines, which still are working just fine (following stomach removal)," Kupfer said.
The exception is vitamin B12, which is absorbed by the stomach. So people without a stomach need to take a B12 supplement.
"I pretty much puree everything I eat," Laura said on Jan. 30 as she prepared a meal of a quarter cup of Greek yogurt pureed with a half banana and a few raspberries and blackberries. The result was four ounces of food consisting of 15 grams of protein and 15 grams of carbs.
"This is a typical meal," she said.
Laura's meal schedule is: 7 a.m., half cup of Greek yogurt; 9 a.m., quarter cup of cottage cheese with a pineapple ring; 11 a.m., two sticks of string cheese; 1 p.m., four to six ounces of a protein shake; 5 p.m., a small, pureed serving of what the family is having for dinner, such as one-third of a chicken enchilada; and 7 p.m., a protein shake.
Goals are 90 grams of protein each day and little to no refined sugars. She drinks water a half hour after meals rather than during meals to allow the food to be absorbed.
"It (the diet) has been easier than I was expecting but it's still challenging," she said. "I was in the habit of eating when I cook and cleaning up after the kids and, on busy days, I might not eat after breakfast until dinner. I can't do those things anymore."
Laura has had abdominal cramps and diarrhea twice but, overall, has done "remarkably well adjusting," Joe said. "I'm really proud of her."
"She's doing very well," Kupfer said. "We've reduced her (stomach cancer) risk down to zero."
While breast cancer screening will be a part of Laura's future "she has an excellent prognosis," Kupfer said.
"The kids know mommy has had her stomach removed but they don't know what that means," Laura said. "Isabella asked if I have a new one. Isaiah asked if it hurt. They know I can't pick them up and play with them like I used to."
Within a couple of months, Laura hopes to be able to pick up the kids again and return to work.
"It takes about a year for full healing," she said.
Isaiah and Isabella will be tested for the gene at age 18. If the kids test positive, Laura and Joe hope that research will result in another option — such as a chemotherapy pill — beyond gastrectomy.
If not, "this is something they can fight off before the cancer progresses," Laura said.
Analysis of Laura's stomach resulted in news last week that she actually did have cancer (signet ring carcinoma) in her stomach.
"It was shocking to hear that I had cancer but I was relieved that I made the right decision," she said. "I have peace knowing we've been given a second chance."
Follow Paul Swiech on Twitter: @pg_swiech