Son Tells Story of Losing Stomach Within Months of Mom Dying From Stomach Cancer
Mr. Grossman learned about his genetic mutation because his mom developed diffuse gastric cancer. In April 2015, at the age of 62, Mr. Grossman's mom Alice was diagnosed with diffuse stomach cancer. It is a tricky cancer to diagnose because the symptoms are similar to symptoms for less serious medical issues. Plus, the cancer is diffuse and therefore difficult to detect. By the time she learned of her disease, it was too late for Alice to remove her stomach.
Originally, doctors told Mrs. Grossman that she had only weeks to live. CDH1 mutation carriers have up to an 80% chance of developing diffuse gastric cancer. Plus, women have up to 50% chance of developing lobular breast cancer. After living with the disease for nearly 3 years, she died in January 2018. Over 700 people attended her funeral.
Four weeks after his mom's death, Jonathan learned he carries the same CDH1 mutation. In June 2018, he had his stomach removed.
Mr. Grossman isn't alone. He has multiple family members who carry the same mutation. Many have had their stomachs removed. Thousands of other CDH1 mutation carriers are in the same situation.
Deciding to have his stomach removed was not an easy decision. However, that changed after his mom died. According to Mr. Grossman: "Despite originally thinking that living without a stomach was crazy, my attitude changed after watching my mom's ensuing nasty battle with the disease. Not only does cancer look miserable, life after total gastrectomy did not look so bad (https://www.cdh1gene.com/
Despite not having a stomach, Mr. Grossman lives a mostly normal life. He eats smaller and more frequent meals (https://www.cdh1gene.com/
One of the hardest parts of his situation is knowing that his mom's death was preventable. People have known about pathogenic CDH1 mutations since the 1990s. Total gastrectomies have been a viable option the entire time. Plus, genetic testing is accessible and affordable. Sadly, they didn't know before her diagnosis is that she carried the mutation. Had genetic testing for mutations causing a high risk of deadly cancers been more routine for healthy people, maybe she would have avoided being the unwitting hero of the family.
Visit www.cdh1gene.com to read about Mr. Grossman's story and the stories of other hereditary gastric cancer families.