Ken Chelcun of Huntersville has been living without a stomach since Dec. 5, 2008, when he had surgery to remove the digestive powerhouse and prevent the cancer that killed his mother and brother.
Hes not the only one in his family who has taken this drastic action.
His sister, nephew and niece have also had their healthy stomachs removed.
All chose surgery after learning they share a genetic mutation that leads to hereditary diffuse gastric cancer, a syndrome that means they have an 80 percent chance of developing stomach cancer.
I wrote about the family in 2008, the same year they started the Chelcun Family Fund to raise awareness and money for research to improve diagnostic testing and treatment for stomach cancer. It has expanded into a worldwide foundation No Stomach For Cancer.
On Saturday, Ken Chelcun, his wife, Suzie, and their three sons will participate in the first No Stomach For Cancer walk, around the perimeter of Pine Lake Preparatory school in Mooresville.
Other walks will take place the same day around the world.
Stomach cancer is more prevalent than people realize, Suzie Chelcun said. It is the second leading cause of cancer death (worldwide) but receives the least amount in federal funding . In our experience, it was difficult to find answers. There really wasnt a place to go.
The Chelcuns mother died of stomach cancer in 1982, at age 52. Brother Greg, of Wisconsin, died in 2009, at 58.
After Gregs diagnosis, Ken Chelcuns sister, Karen Chelcun Schreiber of Wisconsin, began researching the possibility of an inherited risk for stomach cancer in their family. Blood tests showed that she, Greg and Ken all inherited the genetic mutation.
There is no screening to detect stomach cancer, and symptoms dont develop until the cancer is advanced.
Given the family history, Ken Chelcun said the choice to have surgery was pretty much a no-brainer.
Now, the next generation is deciding.
Gregs son Brian, 30, and daughter Johanna, 28, both have tested positive for the mutation and had the surgery.
Schreiber has two grown sons one tested positive but hasnt had surgery; the other has chosen not to get tested.
Ken and Suzie Chelcuns sons are 14, 12, and 9, and geneticists have advised them to wait until theyre 18 to even consider testing.
Its a hard knowledge to face, Suzie Chelcun said. Its going to be something theyll have to decide when they get older.