Yesterday, I had a telehealth appointment with the NIH about my CDH1 gene mutation. The information that I got in those 30 minutes was completely different than what the genetic counselor and surgical oncologist had told me. And now.... I'm at a loss about what to do about my surgery date coming up.
Basically what I've been told was my risk for diffuse gastric cancer was between 56-85%. But what the doctor from the NIH for the clinical study I entered said since my family history of cancers doesn't include stomach cancer, my risk was more like 30%, and instead, my breast cancer risk was more serious. That is a huuuuuuuuge difference. I have scheduled a Total Gastrectomy under the assumption that my stomach cancer risk was the more pressing issue. Getting it done and over with was how I was tackling this. I came to terms with the fact I was going to have major surgery...
But now what? Do I cancel my surgery and hope that the endoscopy I'm getting doesn't show any signs of cancer? Wait a bit later on to do the surgery rather than next month? Or should I go thru with it anyways? What am I supposed to trust: information from the military hospital system or the NIH?
I have no clue. But I have to find one before my surgery date creeps too close. Otherwise, I might be making an unnecessary life-changing decision out of fear that may or may not be accurate.