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.
The meeting with the Surgical Oncologist at MUSC went well. It was sobering and he was blunt, which I appreciated. He concurred with the medical guidelines and recommends I have a prophylactic total gastrectomy. I never heard of those three words together before just a few weeks ago. He also said, “if you don’t have this surgery I believe there is a 100% chance you will get stomach cancer”. That was a moment my wife and I had not prepared for. This whole thing seems like a bad dream. But – it’s real life and we have to figure out what to do.
He said he would be happy to do the surgery and felt confident, although, he has never done a procedure like I need, and he only treats cancer patients. It highlights the fact that HDGC is so rare. It’s good to know we can stay in town if needed, but I’m nervous that he doesn’t have the experience I desire. I’m going to speak with Karen at nostomachforcancer.org
One of the good things about the meeting was it helped my wife and I get on the same page. It was hard going to the cancer center and seeing all the cancer patients. It was hard because you can see on their face the difficult road they have been down, and have yet to finish. However, at the same time, it was a blessing seeing their fight and their caregivers serving so selflessly. I need to toughen up really quick.
I’m meeting with a surgical oncologist on Wednesday which was the “next step” after finding out I have HDGC. Between being sore from the race and thinking about my upcoming appointment Wednesday, I couldn’t sleep last night. I rarely have sleeping issues. Matter of fact, I can sleep almost anywhere. Something has to be really bugging me for me to lose sleep.
I’m excited about today, however, because I have a call today with the founder of No Stomach For Cancer. I’m excited to hear her feedback. She wants to give me tips and information about things I should know before my appointment tomorrow. I feel at peace speaking with people who have done this before. She went down this road 10 years ago and created No Stomach For Cancer because there was such little information and help during her diagnosis. Thank God for her. I can’t imagine figuring this out without nostomachforcancer.org
I’m starting to accept the fact that I’m going to have to get my stomach removed. It still sounds crazy to me. It also sounds crazy to people when I tell them what’s going on. They say things like, “Can’t you just live a healthy lifestyle?”. I wish it were that easy. According to the publications, I have been reading, my gene mutation has created a situation that a healthy lifestyle cannot prevent. I’m trying to figure out how to educate those around me without being too much of a nerd. I also know that this is a tough topic and difficult to understand.
Hopeful for a great meeting tomorrow.
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,
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!