Life and circumstances are changing quickly. Since last week, we spoke to arguably the best surgeon who specialized with HDGC (Sam Yoon from Sloan Kettering in NYC). Thankfully, the hospital is in-network so I was able to book an appointment directly with his office. Thus, I have an appointment for a prophylactic total gastrectomy for Jan 6th, 2018. That’s 80 days away. Which doesn’t seem very far from now. I have to get an upper endoscopy in November and I’m praying the results are negative and Dr. Yoon can proceed as planned.
I felt really good after speaking with Dr. Yoon. As of last week, he has conducted 51 HDGC prophylactic total gastrectomies and countless TG’s from cancer patients. His results are very good and his name is referenced in nearly every HDGC documentation/medical guidelines I have reviewed.
People keep asking me, “how are you doing”? However, I’m struggling to find emotions for this whole thing. I’m more in reaction mode as I feel I don’t have a choice other than to have my stomach removed. Thus, I have to take steps in the right direction. I literally can’t imagine how I’m going to feel when I get in NYC and lay on the operation table. I have anxiety just thinking about it.
I also didn’t understand how expensive this whole thing will be. Airfare and hotel alone will be more than $3,500. It will also max out my deductible ($10,000) and who knows what else. Again, I don’t have a choice.
On a different note, I’m competing in my first Ironman 70.3 event this weekend in Wilmington NC. It should be awesome and I’m sure I’ll have to push through some uncomfortable feelings to finish the race with a respectable time. (1.2M swim, 56M bike, 13.1M run). I’m going up with several friends from church.
Thanks for reading. This is going to be an interesting next few months.
I just finished an Olympic distance triathlon at Kiawah Island, SC. My time was about 9 min slower than my goal but the waters (ocean swim) were super rough which made the swim very hard for me (motion sickness). The bike part was great and I improved from last year. The run was brutal as the heat was 90ish degrees with 95% humidity. So, the heat index was 101. I just couldn’t run fast without feeling like I was going to pass out.
Last week was bizarre. That is the only way I know how to explain it. I felt a strange peace about the genetic testing so when the Genetic Counselor (GC) told me I tested positive for CDH1 Gene Mutation, I didn’t know what to say. I also had been telling my wife, Melissa, to not read up on CDH1 Gene Mutation as the information out there was scary and we didn’t need to rush into knowing anything until we found out if I was positive/negative. I thought that was a good plan, but maybe not. Now she is playing catch up but seems to be in great spirits.
We have an appointment with the surgical oncologist on Wednesday, which I’m happy I didn’t have to wait long. I did learn through a connection that he does have at least one experience with HDGC and CDH1 Gene Mutation. That is important as I start this journey because HDGC is not common so I want to get advice from those who have seen it the most.
If you want to learn more about HDGC and my CDH1 Gene Mutation, you can learn more at the page called “Learn about HDGC” at the top right of this website.
Thanks for reading,
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!