10/4/2017 – Learned I have the CDH1 Gene Mutation
I learned I’m a carrier of the CDH1 Gene Mutation. Learn more here: https://www.nostomachforcancer.org/about/hereditary-diffuse-gastric-cancer
The same exact gene mutation that killed two of Mom’s cousins and that Mom and my Uncle have. It’s most likely the same thing that killed my other Uncle in 1990, but we will never know for sure. All the things point to it though (rare cancer, undetectable until very late, etc).
I’m still processing everything and because there isn’t a super strong history of early onset, I don’t know if anything will change in the short term. I’m going to try and figure out how to eat much more healthy to prevent any cancer growth in my body. (Update – I now know this is pointless based on the type of disease. A healthy diet doesn’t prevent cancer from forming based on the gene mutation).
My biggest concern, and as I feared, my wife is very upset. She is sad and concerned. I totally understand. I feel kind of emotionless at this point. She mentioned the kids (we have three), and how they might be impacted. I get it. It’s a lot to take in. I’m just trying to take one step at a time. The next step is to meet with the local surgical oncologist and listen to his recommendations. I wonder if he has ever seen this before? I’m going to try to do some research and figure out who has the most research out there. I need to figure out how to be there for her.
Listen, I want to be cautious and safe but I’m feeling really good at 32. I’m about to finish a half-ironman which does require a good amount of fitness (1.2m swim, 56m bike, and 13.1m run). I’m not saying that I’m immune or anything, but because my family history seems to show onset in the 60’s in most cases, I don’t believe I have to make drastic changes in my life just yet. (Update – I now know this is inaccurate and the CDH1 Gene Mutation is different for everyone. There is no pattern with onset age, but – the gene mutation is creating cancerous cells. I just don’t know how many or how much).
I’m married with three wonderful children. At the age of 32, I found out my Mother was a carrier of a rare gene mutation in her CDH1 Gene. It was the same gene mutation that caused stomach cancer in three of my mothers family members. Being a carrier of this gene mutation gave me an 80%+ chance of developing stomach cancer. On top of that, once cancer is formed, it’s extremely hard to detect and almost always fatal.
I was given a choice: 1) monitor the situation and get scans/scopes/biopsies a few times a year to try and “catch” cancer early, or 2) have a prophylactic total gastrectomy (total removal of the stomach). The end goal: Live a very long life. I didn’t like either option, to be honest, but option two seemed to have the best chance for me living a long life. It is also the recommendations of doctors familiar with this disease.
I created this blog to document my journey. Others in my situation have done the same, and I found it very encouraging as I tried to learn about my disease. I’m hopeful I can pass the torch. I’m having surgery January 6, 2018. Wish me luck!