Let's Talk Testing

After finding out about genetic testing, I knew it was for me.  I called my Dr. and he told me my Mom had to have the test first.  Well, with her already being diagnosed we thought that pointless. (It's not pointless, but we'll get to that later!)  Why have her do that when it doesn't matter if she's positive or not?  I begged my Dr. to order the test.  Gave him my reasons and he finally agreed.  During that conversation I discussed my family history and asked if I should be getting a Mammo.  He said "NO", you can wait until your 40.  Really??  I didn't feel that was right.  I just had this strange feeling that I just had to keep pushing for what I felt was right.
I had my BRCA testing March, 26th 2013 at 10:15am.
I was nervous as hell.  Not because of the actual test, but what the results may be.
I was expecting a blood test, but that's not what I got.  All I had to do was swish a mini bottle of Scope in my mouth (buccal testing) and spit in a test tube several times.  I actually still have the rest of that bottle of Scope.  I remember trying to bite the insides of my cheeks to make sure enough cells would find their way into my spit/Scope mix.
Myriad Genetics is the lab that runs the test. http://myriad.com/patients/
I was praying it would be covered by my insurance because it is a VERY expensive test.  Lucky me, because of my family history it was!  I received a phone call from Myriad letting me know the test was covered, but that if it came back negative they recommended I have the BART test.  It's just a deeper analysis of the genes.  They informed me this would NOT be covered by my insurance, that I could pay them $700 with a nice no interest 25 month financing option.  I wasn't so sure.  I said, let me get back to you on that.  They informed me that if my Dr. really wanted me to have it, they could fight for it.  I figured I'd talk to my Dr. at some point, but wasn't really worried about it.  10 minutes after I hung up with them, they called me back and said due to my family history, the BART test could be covered under the Affordable Care Act.  YAY!
On April 16th, 2013 I got a phone call that would change my life forever.
I was BRCA2 POSITIVE. (Ironically they ran the BART test too, even though the BRCA was positive, hell I didn't have to pay for it, so no loss I guess!)
Well what the hell does that mean???
My Dr. as nice as he his, couldn't tell me crap.  In retrospect I wish I was referred to a genetic counselor that could have sat down and discussed what all this meant.  I was lost.  I had to turn to the good ol' internet for advice, once again.  What he could tell me was that I would no need a Mammo, MRI, two breast exams by physicians yearly, a CA-125 blood test and a pelvic ultrasound every six months.  (Oh how things change!  I thought I didn't need a mammo til I was 40!)
My advice to you:  If you feel strongly about something, FIGHT FOR IT!  It's your body and you only have one!
I called Myriad because I was kinda lost and they led me to some great resources I'd like to share:
http://www.brightpink.org/
http://www.facingourrisk.org/
Next step was talking with a Gynecologic Oncologist...what?  But I DON'T have cancer.
And so my appointment with, we'll call him Dr. HOLY HELL YOUR FREAKING HOT! or HHYFH for short. :)
Jamie♥☺

The bottle of Scope that changed my life: