Welcome to our CaringBridge website. We are using it to keep family and friends updated on my situation. As you may know, my sister was diagnosed with lobular breast cancer several years ago. Her and her husband’s diligence identified that she had a CDH1 gene mutation, which commonly leads to hereditary diffuse gastric cancer (HDGC) or stomach cancer. I was tested earlier this year and found that I too, carry the gene mutation. Being a carrier of this gene mutation gives me a 70-80%+ chance of developing stomach cancer. On top of that, once cancer is formed, it’s extremely hard to detect and almost always fatal. It’s a tough message to hear from an oncologist: “It’s not a matter of IF you are going to get cancer, but rather WHEN. And when you do, there is little I can do.” And therefore, we are following the protocol for my situation which is a total gastrectomy (or TG for short), which is removal of the stomach.
This next year will be both a physical and mental challenge as my body adjusts to life without a stomach. There are so many things to be thankful for: my sister and her husband who were on top of this; my sister's husband who was diligent in researching and guiding the entire family through this process; the gene mutation was detected before any cancer was identified (that we are aware of), this surgery will eliminate any chance of getting stomach cancer, Mayo Clinic is a short 90 mile drive with in-network coverage from my employer, Mayo has one of the world's best experts in performing stomach removals, and the list goes on.
Kate and I are blessed to be surrounded by so many friends and family who have offered support and encouragement. While my kids have a 50% chance of inheriting this gene from me, we are optimistic that research by the National Institute of Health NIH, No Stomach For Cancer organization, and others will develop alternative treatment for our children, who may choose to be tested after they turn 18.