Wednesday, April 27, 2016

ONE YEAR LATER

 
Today is ONE YEAR since I was seen down in Mayo for my Genetic Testing consult and blood draw for the test.  I was given an abundance of information on anything and everything related to the CDH-1 mutation and Hereditary Diffuse Gastric Cancer.  I got statistics on the possibility of my test coming back positive for the CDH-1 mutation to statistics on if I test positive, negative, or inconclusive.  The whole way back from Mayo, while Sean was driving, I was google searching as much information as I could and everything Geoffrey, my Genetic Counselor, told me was what I was finding.  I knew during our consult he had mentioned IF you test positive, you can have some of your stomach or all of your stomach removed, but that would be further discussed with the GI department IF my test comes back positive.  I remember taking in everything I could, but thought, “Ya right….you can’t LIVE without your stomach.  How is that even possible??”  Sure enough, I found a ton of information regarding this and that you CAN live without your stomach, as you guys know.  I didn’t know how my test would come back, but I wanted to be prepared to hear my results whether positive, negative, OR inconclusive.  I did the blood test right away that day and had to wait for the pre-authorization to come back from insurance and then the actual test to be done.  Right before the Fourth of July, I called to find out if any results were back.  I remember Geoffrey’s receptionist telling me sometimes you get a call, but most times you just get a letter.  Then, she looked further into my chart and told me I’m marked to get a call.  I asked her how it’s determined if you get a call or letter (even thought I had a feeling if you test positive, you probably get a call) and she kind of stumbled over her words and said she wasn’t sure, but he’d be in touch with me shortly.

Here we are to current day…one year later.  It’s crazy the amount of information I’ve gained about this crazy little CDH-1 mutation and as much as I wish that CDH-1 stood for Courtney (my sister), Darla (my mom), and Heather (ME!) are #1, I’m just thankful to know all that I do and be able to be preventative and never have to worry about Hereditary Diffuse Gastric Cancer taking my life!

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