TWO YEARS SINCE GENETIC TESTING

Today is TWO years since we were down at Mayo Clinic, Rochester, MN sitting in the office of Geoffrey Beek, Genetic Counselor.  I remember getting my paperwork from Mayo and it showing that we would have an appointment that would take a few hours.  I thought, “Ya right!  There’s no way this appointment would take a FEW hours!”  Needless to say, I was very wrong.

Geoffrey was amazing!  He told us all about Hereditary Diffuse Gastric Cancer (HDGC) which is the kind of cancer that took my mom’s life and most likely my grandpa’s, too.  (HDGC wasn’t noted into the cancer books until after my grandpa passed, so that’s why I say most likely)  My mom didn’t have genetic testing done, so we didn’t know if she had the mutation or not.  You can still get HDGC and NOT have the mutation.  Because of that, Geoffrey gave me a 25% chance of testing positive for the mutation.  He explained what would happen if I tested positive, negative, or if it came back inconclusive.  I remember feeling mentally exhausted when we left, but at the same time, I didn’t feel like there were any other questions or facts he could have given me.  We left the office to discuss everything…..if there’s only a 25% chance of it coming back positive and you can still get HDGC even without a genetic mutation, is it worth it?, how much was all of this going to cost?, would it be covered by insurance?, what really will I do if it comes back positive (how DO you live without a stomach??)? 

We left Geoffrey’s office, had lunch and discussed that you can’t put a price on your life and no matter what the results we got back were, it would be peace of mind. We stopped at the business office to find out fees and if they allowed payment plans (which they did) just in case it was going to be super spendy (which it was… about $6k without insurance). Then, we called the insurance company to find out if it was covered and how much would be covered (yes, it’s covered…had to meet the deductible first and then we would owe 20%).  We decided with all of that information that it would be worth it to do.  So, we marched back up to Geoffrey’s office and got the orders for the blood work.  A simple blood draw and on our way back to Bismarck we were.

With a seven hour drive back, Sean drove and I did a LOT of research.  I was on Google reading about HDGC and the mutated CDH-1 gene on any website I could possibly find.  After reading for that long, it was a no brainer that IF my results came back positive, I would have a total gastrectomy (complete removal of my entire stomach….even saying that now sounds scary).  I didn’t really have a hunch one way or another with how my results would come back, but I wanted to be prepared.  I had 4-6 weeks to prepare myself for when they called and gave me the news.

After a few weeks had gone by, I felt like I should have heard from them.  So, I gave them a call and the nurse answered.  She told me that sometimes they send a letter and sometimes they call you.  She looked in my chart and said I was flagged to get a call.  I asked, at that point, “Well, what determines if you get a call or letter?” (already knowing the answer) and the poor girl stumbled over her words.  So, Geoffrey called and I found out I tested positive for the CDH-1 mutation.  That gave me an 83% chance of getting HDGC (the same cancer that killed my mom at age 44) and if/when I got the cancer, I would only have a 4% chance of survival.  On top of that, the average age of this brutal cancer was 38.  I was 30 at this point and knew I needed get on this ASAP.

After multiple visits to Mayo to meet with the GI team, upper endoscopies, waiting for the waiting period with my insurance to pass, I had my WHOLE DANG stomach removed.  I was TERRIFIED before surgery, but I KNEW this HAD to be done if I wanted to be around for family & friends.  I now have a 0% chance of getting stomach cancer (so take that, stomach!!!) and for that I am SO grateful!!! I have had an overwhelming amount of support which has been SO helpful and really, living without your stomach isn’t that bad.  It’s, actually, much easier than I ever expected it to be.  Life is different now, but nothing I can’t handle.  There hasn’t been one day that I’ve regretted this surgery and if I had to go back and do it again, I ABSOLUTELY would…hands down, no questions asked!  “The best part about life after surgery is LIFE!”