Friday, October 21, 2011

Negative Outcome

it's actually better than that title sounds.  a few weeks ago i made the difficult decision, with the input of my doctor & support of Nacho, to have some genetic testing done. i'd been considering this for a couple of years, and finally made the leap.  i'm sure any woman reading this can guess what it was - BRCA1 & 2 Genetic Test.  my mother was diagnosed with breast cancer while in her early 30's.  she elected to have a Radical Double Mastectomy at that time.  consequently, i have been getting mammograms since i was about 29 - at the time the standard was to start mammograms 5 years sooner than your mother or sister were diagnosed; that standard has since changed to 10 i believe.  let me cut to the chase, i tested Negative for both - ovarian & breast.
now, the rest of the story.....during a routine yearly exam, my doctor asked if i'd thought more about it & would consider getting tested.  i told him i've always kinda felt that with my mom's diagnosis, i knew i was probably at greater risk than say someone who had no history in their family at all - i now know this to not be true at all.  and also, so what? what if you test positive? what are you going to do about that?  well, therein laid the issue - it was not the test that was scary, it was WHAT DO YOU DO WITH THAT INFORMATION?
so Nacho & i had some very lengthy discussions about it. i'm not one to live in ignorance.  i have often said if ignorance is bliss, then i'm the happiest person you will ever meet.  but not really. (1) i'm not a very happy person, ask anyone & (2) it's not so much that i'm ignorant as it is, i'm just not very bright. those aren't the same things are they?  but i realized, i'd want to know. and as someone said to me during this, any information is GOOD information.  so what if it comes back positive?  at least you know what your options are.  and what would you do?  the 2 or 3 people that knew i was doing this asked as well.  you have options.  i would not hesitate to have my ovaries removed. i'm not having kids so that is a no-brainer.  but would i have a Mastectomy?  well, yes i would, but i wouldn't necessarily HAVE to. that was something i had not thought about. so this process was a good thing, because it allowed me to look at the multiple options available. i didn't have to think "radically".  as my doctor told me, one path would be to have mammograms twice a year & not just standard mammograms, embrace some of the new technology in that area too.  now, i wasn't so scared.  and you know what?  Nacho said it best: if i did have to "give up the girls" (my words not his), he'd rather have me here alive without them, than not!  i'd be lying if i said i was pleasantly surprised or flattered.  i was neither cuz i know exactly who i married!  BOO-YAH!
but a couple of other factors that helped to make this decision for me:  a friend from graduate school was diagnosed with Stage3 breast cancer a few weeks ago.  Nacho posed the question that if i were to ask her right now if she would have had the test (i do not know if she ever has), what do you think she would say?  he had a point.  BUT, it's also important to note, a Negative result does not mean you will never get cancer, you just carry the same risk "as that of people in the general population."  and that's important because i know someone else who tested negative for the BRCA1 & 2 & she was diagnosed with breast cancer last year. so again, i had to ask myself, what good is this test?  and the best answer i could come up with is, as someone else put's good information either way! and, of course, i simply cannot live my life without saying i tried to know and do all i could about this. 
so here's how it worked for me (and this is by no means the way it might work for someone else): my doctor's office took a blood sample & sent it to Myriad.  i will not provide a link to their site, you can Google it yourself & read all about the testing & controversy of this company's genetic patent on your own. that is a whole other issue i am in no place to tackle!  as my doctor explained it to me, Myriad checks with your insurance to see if they will cover the testing. if they do, then Myriad proceeds with the testing.  IF YOUR INSURANCE DOES NOT COVER THIS, Myriad contacts you, tells you so, & asks if you want to proceed with the testing, paying for it yourself.  the cost is estimated at some $3000.00 USD give or take.  i was fully prepared to pay this myself if necessary, but i decided to contact my insurance company to start with - hey, why wait?  indeed they did cover it due to my family history.  i got as much family history from my mom's side & my dad's as possible - my mom's case was the only known case on both sides.  and that was that!  blood taken, shipped, test run, results received from my doctor 10 days later = NEGATIVE!
i should be through the roof right? well, i guess knowing that there is no way to know anything for sure, that i could still find a lump or have a questionable mammogram tomorrow, well, it kinda takes the elation out of it for me.  but i'm am glad i did it & grateful for the results given to me today. at least now i can say not only do i refuse to live in complete ignorance, but, should something happen, well, i did all that i could, given the tools currently out there, to find out what i could.  and as more tools become available with technology, i'll use them when they are & i'm not afraid of what to do with the information!

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