Couple Lives Without Stomachs Due to Rare Genetic Condition

For a small but growing number of individuals, the prospect of stomach cancer isn’t met with chemotherapy or radiation, but with preventative removal of the organ itself. While seemingly drastic, this surgery is offering a lifeline to those carrying rare genetic mutations that significantly elevate their risk of developing the disease.

The decision to undergo a prophylactic gastrectomy – the surgical removal of the stomach – is not taken lightly. It fundamentally alters a person’s digestive process, requiring frequent, small meals and lifelong vitamin supplementation. However, for families burdened by inherited genetic predispositions to stomach cancer, it can represent the best chance at a normal lifespan.

One such mutation is in the CDH1 gene. As highlighted in a December 2017 report from NBC Washington, individuals with this mutation face a lifetime risk of stomach cancer ranging from 60 to 70 percent. What we have is considerably higher than the risk associated with BRCA gene mutations, which increase the risk of breast and ovarian cancer, with a lifetime risk of around 40 percent.

Dr. Jeremy Davis, Surgeon in Chief at the National Institutes of Health Clinical Center, explained that while stomach cancer isn’t common it often goes undetected until it has spread, making early detection challenging. “Most stomach cancers arise for reasons we don’t really know, though We find environmental factors at play, but David (Fogel) happened to inherit a gene mutation and patients like David are uncommon, but they are at greater risk for stomach cancer,” he stated.

The story of David Fogel, featured in the NBC Washington report, illustrates the difficult choice many face. After watching his aunt succumb to stomach cancer, and testing positive for the CDH1 mutation, he opted for a prophylactic gastrectomy. “Going through that with her and my family, I knew that if there was a way to nip that in the bud and not have to deal with it, it was a bit of a no-brainer,” he said.

The situation isn’t unique to the CDH1 gene. A April 2025 report from the Deseret News details the experience of the Dickson and Hatch families, who carry a mutation in the SMAD4 gene. This mutation leads to the development of polyps in the digestive tract, which can eventually become cancerous. At least 20 members of their extended family are affected. Chari Dickson, 36 years old, recently had her stomach removed as a preventative measure, following in the footsteps of her sister, Ashlyne Hatch.

The decision to undergo this surgery is often driven by a family history of early-onset stomach cancer. The Deseret News report highlights the devastating impact the SMAD4 mutation has had on the Dickson and Hatch family, claiming the lives of Dickson’s mother, grandfather, and at least one uncle. Preventative surgery offers a chance to break this cycle.

Living without a stomach requires significant lifestyle adjustments. Both Dickson and Hatch now need to eat small meals throughout the day to maintain adequate nutrition. The surgery impacts nutrient absorption, necessitating lifelong vitamin supplementation. However, these challenges are often seen as a worthwhile trade-off for avoiding a potentially fatal illness.

While these cases are relatively rare, they underscore the importance of genetic testing for individuals with a strong family history of stomach cancer. Identifying these mutations allows for proactive monitoring and, in some cases, preventative surgical intervention. The National Institutes of Health is currently conducting clinical trials to further study the effects of stomach removal in patients with inherited risks of stomach cancer.

It’s important to note that prophylactic gastrectomy isn’t a universal solution. The decision to undergo surgery is highly personal and should be made in consultation with a multidisciplinary medical team, including a genetic counselor, surgeon, and gastroenterologist. The risks and benefits must be carefully weighed, considering the individual’s overall health, genetic profile, and family history.

The increasing awareness of these genetic predispositions and the availability of preventative surgical options are offering hope to families previously facing a grim prognosis. While living without a stomach presents challenges, it can provide a pathway to a longer, healthier life for those at highest risk.