Test Results

I knew the outcome of the test even before I left work that day.  It was Monday February 9^th and I sat in my office and just knew.  I didn’t have to drive to the University of Minnesota’s genetic lab, because I knew what they were going to say.  Now I am not the kind of person who normally sees the worst in situations.  I don’t go into panic mode where the is a new pain, lump or bump on my body because most of that just has to do with me getting old.   Yet, I knew exactly what the outcome was and what they were going to say.  I even knew that my Genetics Counselor would dance around the topic before she gave me the news.   In a warped kind of way it gave some clarity around the situation and I got a chance to think about how my life was going to change.   I wish that I could say that with this clarity came an overwhelming sense of peace, but that would be a load of crap.  It is more of a controlled panic. 

Now I work in Oakdale, and I had the testing done at the University of Minnesota’s genetics lab in Maple Grove.  That gave me a good 35 minute drive to process how this was going to go and how I thought I would react.   My wife Edie met me at the clinic and we went in to hear the results.  True to form, I remember the Genetics Counselor talked about the weather, asking about my sister Melanie, and then asked if we had any questions before we got into the results of my test.  “NO, what were the results of my test?”  It was the only information I wanted to hear and I needed to hear her say the words.    “You tested positive” was all she said.   And this is where the panic/stress becomes less controlled.  I can remember staring at the floor hearing but not comprehending the conversation going on around me.  There was talk about appointments, surgeons, and other specialists, but I was nowhere near that.  So, I politely excused myself and walked out. 

The test was for the CDH-1 Gene Mutation.  The CDH-1 gene mutation is a genetic mutation that is passed on from generation to generation and is the leading cause of hereditary diffused gastric (stomach) cancer .  Diffused gastric cancer is a rare and deadly style of cancer and there is no cure or treatment.  The gene in our family was found as a result of testing done on my sister Melanie who is battling breast cancer.  A person with this gene mutation has up to an 86% chance of developing this cancer in their lifetime.  Your personal risk depends on your health and medical history.  For a person without this gene mutation the chances of getting this form of cancer is less than 1%.   The only thing for sure that we know is that one of my parents had the gene mutation and passed it on to both Melanie and me.  Now there is the chance that I have passed it on to my children.  Sorry guys.

So where am I now.  I am in fact gathering mode.  I have met with the head of gastrological surgery at the University of Minnesota.  They have placed my chances of getting this cancer at over 75%.  The challenge with this cancer is that there are no tumors to look for, it grows within the walls of the stomach, and it is really difficult to find.   Once found the cancers is typically in advanced stages, it is an aggressive and fast moving cancer all of which makes treatment difficult.

According to the U of M, my options are:

1.       Ignore it.  I know that I have the gene mutation, but I can just go on with my life.  They do not believe that I have stomach cancer today.  I just need to know that if and when I get the cancer;  96% of the time cancer wins.

2.       Check it.   Go in and have an yearly endoscopy and hope they do not find cancer, however remember it is really hard to find and if they do find it, cancer still wins 96% of the time.

3.       Remove it.  Total Gastrectomy.  Stomach removal.. Enough said. 

So next week I will be spending Monday and Tuesday at the Mayo Clinic getting a second opinion and hoping, praying for a fourth option.  I am meeting with a lot of the same Doctors that Melanie met with so they know our families situation.  I may or may not go down the same road as Melanie.  I am older and my situation is different from hers and I am a ways away from making that decision.   April 9^th I go back down for a meeting with the surgical team that did Mel’s procedure to get their recommendations, so I will know more then.   

Is there good news in all this?  Sure.  As of today, as far as we know, I do not have cancer.  I will be having and endoscopy at Mayo next week to confirm this, however I do not have any of the symptoms associated with this type of cancer.   If I decided to have the surgery, I have a light that is leading the way and that is my sister Melanie.  She has already had the surgery to remove her stomach and is proving day in and day out that you can live just fine without this risk.

So why am I writing this?  They tell me it helps with the situation.   Writing it down and sharing it is supposed to be therapeutic.   I am not so sure about that.  If you know anything about me you know that I am not real big when it comes to sharing about me.  I would rather talk about sports, politics, beer, wine or even how horrible my golf game has gotten.   I do know this though, I am the middle of seven and we still have 4 siblings that may or may not choose to get tested.  There is also a gaggle of nieces and nephews that at some point in time may need this information.  So like Melanie does with her CaringBridge site, I will use this blog to share what happens and what I learn. 

Relax
I'll need some information first
Just the basic facts
Can you show me where it hurts?

(Comfortably Numb by Pink Floyd)