When you think of gastric cancer you probably don’t picture healthy sisters in their early 30’s, but we are the faces of gastric cancer.
Our family history is riddled with stomach, colorectal, and breast cancer, so at the urging of our doctors we underwent testing to determine if there was a genetic component at play. In early 2016 we both tested positive for a mutation on our CDH1 gene, giving us an 83% risk of developing hereditary diffuse gastric cancer (HDGC) and a 53% risk of developing lobular breast cancer. While there are several screening options in place for the breast cancer there is currently no effective screening or testing for HDGC and in most cases the cancer is not detected until it is in an advanced stage. We spoke with three separate surgical oncologists and learned that the only feasible option we had to prevent this cancer was to undergo a prophylactic total gastrectomy and since the risks for HDGC increases in your 30’s we were advised to have the surgery soon, as we were 31 and 34 at the time. On May 24, 2016 we both underwent a prophylactic total gastrectomy. One week later pathology came back on our stomachs and we learned that we both had stage 1 HDGC at the time of our operation. We had no outward signs of cancer and only a month before we both underwent an endoscopy with over 40 biopsies taken and nothing showed up for either of us.
A lot has changed in our lives since our surgery. We’ve lost weight, our eating habits are very different, and we’ve each faced our own hurdles and complications. More importantly, we each have a new joy and appreciation for our lives, for our beautiful children, for our loving family, and for our supportive friends. We have three little boys between the two of us and we know that they each have a 50/50 chance of carrying the same mutation. Our focus now is on raising awareness and money for better screening for HDGC in the hopes that when our boys are older they will have options other than a total gastrectomy.
We are so grateful that we were able to learn about our CDH1 mutation and remove our stomachs before our cancer had advanced beyond stage 1. We urge anyone with a family history to undergo genetic testing and know what options are available to you. Cancer does not have to be a fear hanging over your head, you can take control! You can follow our journey here.