I’ve been getting endoscopies every single year since I was about 12 years old, and without a stomach, this might very well have been the last endoscopy I’ll ever need. As I am now apart of the research studying this cancer gene and prophylactic (preventative) gastrectomies (surgically removing the stomach), I’m now going through the standard “study” procedures as I prepare for surgery. The first reason to get an endoscopy before surgery is to make sure that I don’t already have visible tumors growing in my stomach. Secondly, the researchers at Stanford want to use the same procedure with all of their CDH1 patients with the hope of developing better ways of screening. Just in case you are curious, an endoscopy is a quick procedure in which a doctor will place a small multi-tool tube equipped with a camera and other goodies to look inside your stomach.
Now while 21 out of the last 22 patients at Stanford discovered tumors in post-surgery pathology despite having clear endoscopies and clear pet-scans pre-surgery, what the doctors are discovering are specific locations that seem to be common places for tumors to start growing.
The plan for my endoscopy today was to take many biopsies from those areas where the tumor cells have commonly developed in other patients with the hope that perhaps moving forward this might become a more effective means of screen CDH1 patients.
Rocking my “Union Jack” socks today, I was ready to rock and roll. The procedure was quick, painless and from visual inspection by the doctors, I’m in the clear. In the next week or so we’ll receive the results from the biopsy, but in the mean time we’re starting to put together our list of restaurants on our Farewell Stomach Tour. We’ve received a ton of great suggestions, very generous offers, and we’re excited.
Our first stop on the tour was Spread in downtown Campbell. I have to give props to my friend Jay for introducing me to this amazing sandwich place. Let’s be honest, have you ever met a man who didn’t like a good sandwich? On top of having amazing gourmet signature sandwiches they have some delicious sides including a homemade potato salad and a mac-n-cheese that change your life. What I recommend:
We were going to do our second stop tonight, but post endoscopy I was still feeling a little woozy, so it’s going to have to wait for a few more days. Until then, cheers!
Steve
Steve Dang 
Best DOB ever. 🙂
Ahh, I remember June 21st, 1984 like it was yesterday… a good day indeed.
Hello Steve,
Thanks for sharing your story on your blog. I am also CDH1 positive, diagnosed just a few weeks ago. Runs through 3 generations that we know about at this time. I have already undergone 1st endoscopy, awaiting results. I will be following your blog as I make some big decisions to undergo the total gastrectomy likely next year as well. I too was born in 1984! Great year.
Hi Rachel,
First of all, I am so sorry to hear that you came up positive as well. While the news is heavy, it’s been really helpful for me to hear that our stories are not unique to us. It’s a tiny, but growing community for sure. We’ll be praying and walking alongside you as you make the best decision for you and your family. You can’t go wrong with 84, here’s to our 30th and many more to come!!!
Cheers,
Steve