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 (HDGC) syndrome.
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.
Karen recommended that Dylan reach out to her surgeon at Memorial Sloan Kettering Cancer Center. At first, Dylan was hesitant.
“It sounded impossible,” he says. “I had never been to New York.”
How Dylan Decided on MSK
Dylan’s situation is extremely rare. Only a few hundred families in the world have CDH1 mutations.
“Our expertise with the mutation Dylan has is second to none,” says MSK gastric surgeon and Iris Cantor Chair Vivian Strong. “We are grateful when patients find their way to MSK so we can provide them with the best possible care.”
When Dylan and Melissa came to MSK, they learned more about his condition and why it was important he address it quickly. 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.
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.
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 a.m., just 30 minutes before Dylan’s preoperative appointment 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. He lost 50 pounds, which was to be expected after this surgery, but his weight stabilized after a few months. 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, 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.