Updated: 11/02/2012 7:38 PM KSTP.com By: Joy Lim Nakrin
Seven people in one Minnesota family have made the risky decision to have their entire stomachs removed after learning they have a rare genetic condition that causes potentially deadly stomach cancer.
Now terminally ill, Tom Torborg of Plymouth was diagnosed with gastric cancer three and a half years ago. Months later, his cousin was diagnosed with the same thing. So, Tom decided to be tested for a rare genetic mutation.
Torborg discovered he suffered from hereditary diffused gastric cancer, a condition caused by mutations in the CDH1 gene. He spread the word to relatives, who also decided to get tested. Seven discovered they too suffered the condition. According to Shari Baldinger, Genetic Counselor at Abbott Northwestern Hospital's Virginia Piper Cancer Institute, the condition makes patients 80% more likely to develop stomach cancer. So one by one, family members decided to follow doctors recommendations to have total prophylactic gastrectomies. Baldinger explains that patients should "consider having the stomach removed because it can be life saving."
By the time Tom learned of his own condition, it was too late to reverse his cancer. He's undergone three surgeries, two rounds of chemotherapy, and one round of radiation. He has just months to live. However, he takes comfort in knowing that despite his suffering, he has saved much of his family. He explained,"when it comes to the end I did my family a good service by making sure we got the genetic testing done."