After two relatives died from stomach cancer, Dylan Davison learned that it wasn’t a coincidence. Genetic testing revealed that some members of his family, including his mother, had a germline mutation in the CDH1 gene. (Germline mutations are inherited at birth.) People with this mutation have a condition known as hereditary diffuse gastric cancer syndrome (HDGC).
People with HDGC are at a high risk of stomach cancer: Women have a risk of more than 50 percent, and men have a risk of more than 70 percent. Those with a CDH1 mutation are often advised to have their stomach removed as a precaution.
Dylan, a 33-year-old salesman from South Carolina, wanted to be proactive about his health. He researched HDGC and decided to have genetic testing in the summer of 2017. When the results came back in October, he was shocked to learn that he too carried a CDH1 mutation.
“I was thinking I would definitely be negative because I’m an optimist,” Dylan recalls. “When I got the call, I spent the rest of the day staring at my computer.”
Later that night, after putting his three children to bed, Dylan shared the news with his wife, Melissa. The two began their research. Dylan came across a nonprofit organization called No Stomach for Cancer and reached out to its founder, Karen Chelcun Schreiber, for advice about his next steps. Dylan’s genetic counselor had booked Dylan a meeting with a local surgeon, and Dylan peppered Karen with questions about what he should ask during the meeting.
It turned out that the local surgeon had never performed a preventive stomach removal, which gave Dylan pause. Karen recommended that Dylan reach out to Sam Yoon, her surgeon at Memorial Sloan Kettering. At first, Dylan was hesitant.
“It sounded impossible,” he says. “I had never been to New York.”
How Dylan Decided on MSK
Only a few hundred families in the world have CDH1 mutations. Dr. Yoon sometimes talks on the phone with people who are considering traveling to MSK for surgery.
“I remember talking to him,” Dr. Yoon says. “I got his medical history and then went over the surgery with him. I didn’t want him to have to come all the way here for that conversation.”
Dylan was encouraged by the opportunity.
“I’ve never been able to call a doctor’s office and ask for an over-the-phone consultation, let alone schedule a surgery halfway across the country,” Dylan says. “This guy is the bee’s knees, and he’s going to just give me a call? That was amazing.”
Dylan, Melissa, and Dr. Yoon spoke about Dylan’s condition and why preventive surgery (also called a prophylactic procedure) sooner than later was a smart choice for him. In people with a germline CDH1 mutation, the average age of developing stomach cancer is about 40. A prophylactic total gastrectomy is often recommended for people in their early 20s. Dylan was 32.
“It was a pretty straightforward recommendation,” Dr. Yoon recalls.
The surgery would involve removing Dylan’s stomach and then connecting his esophagus to his small intestine. This technique, called a Roux-en-Y reconstruction, is similar to what is used for gastric bypass surgery. The main risk of this procedure is leakage into the abdominal cavity from the connection between the esophagus and the small intestine. This problem can be life-threatening. But Dr. Yoon has performed more than 50 prophylactic gastrectomies, and none of his patients have ever had a leak.
“He gave me the confidence that he would do a good job,” Dylan says. “He had a lot of success, and that made me feel at ease.”
“I tell patients that this is an extremely rare syndrome, affecting only a few hundred extended families in the world. And I’ve now done 53 of these surgeries,” Dr. Yoon says. “The vast majority of stomach surgeries in the United States are done at hospitals that don’t regularly do them. There’s data that show institutions that do more of these surgeries have lower short-term complications and lower death rates.”
Dylan and Melissa decided to schedule surgery for two months later, in January 2018. Coming to New York City in January wasn’t easy. Surprisingly, a snowstorm hit South Carolina when Dylan was scheduled to leave, forcing the surrounding airports to close. Dylan and Melissa drove to North Carolina, flew to Ohio and then on to Washington, D.C., and finally caught a train to New York City. They arrived in New York at 9 am, just 30 minutes before Dylan’s preoperative appointment with Dr. Yoon began. But the team accommodated Dylan just fine, and he was cleared for surgery the next day.
A New Normal
The surgery took three hours. Dylan stayed in the hospital for six days and received a lot of support that helped him recuperate.
“At MSK, the nurses and technicians were extraordinary,” he says. “I wish I was friends with them still.”
Once he returned home, recovery was more challenging. He had to figure out the foods and drinks his new body could tolerate.
“That was the hardest part for me,” he says. “I’m a linear thinker. I like rules and systems. But with this, you can eat something one day and the next day you never want to eat it again.”
Slow and Steady Wins the Race
Dylan adapted to postsurgery life extremely well, Dr. Yoon says. He lost 50 pounds, but his weight stabilized after a few months. This was expected: The majority of people who have this surgery lose weight, according to Dr. Yoon. Most people find that they can’t eat as much as they used to, but Dylan’s diet remained consistent.
Dylan was eager to return to one of his favorite hobbies: competing in triathlons. He took things slowly to get back to feeling like himself. Once he could walk, he set his sights on speed walking. Once he could speed walk, he aimed to run. Six weeks after surgery, and with Dr. Yoon’s permission, Dylan embarked on his first jog.
“It felt different, but not terrible, and I got a jolt of encouragement, thinking, Hey, this is doable,” he recalls.
Before surgery, Dylan had competed in Ironman 70.3 races, which involve a 1.2-mile swim, a 56-mile bike ride, and a 13.1-mile run. He wanted to tackle another. After running a near personal best in his first triathlon five months after surgery, Dylan knew he could reach for the Ironman.
“That’s when I realized I could be normal again,” he says.
He decided to compete in an Ironman 70.3 in April 2019 and used the opportunity to fundraise for No Stomach for Cancer. After months of intensive training, and some more trial and error with his diet, Dylan finished the race in his goal time.
“I felt so empowered,” he says. “I realized I can do a lot more than I think, and that it’s not about me. I knew that people were watching, and I wanted to give my best effort.”
Hope for Others
Today, Dylan checks in with his local doctor to make sure he is still in good health after surgery. His quality of life is good, and he’s focused on working toward a full Ironman race, which entails a 2.4-mile swim, a 112-mile bike ride, and a 26.2-mile run.
Whether he was figuring out his surgery plan or conquering a race, Dylan says that taking things one step at a time helped him move through his challenging experiences.
“Taking a deep breath and focusing on just putting one foot in front of the other, I feel, is the best way to accomplish things,” he says.