Sunday, October 12, 2014

BRCA Testing...to test or not to test? That is the question

As I've mentioned in several posts I am BRCA1+.  I found this out after meeting with a cancer genetic counselor, who after talking to me about my family cancer history recommended genetic testing.  My test was a full test as I didn't have the specific mutation for our family at that time.  The cost was approximately 4,000.00 was was covered by my insurance.

And while some have said I am brave to have gone through it.  Let me tell you a little
secret.  I wasn't.
 In fact I was a big scaredy cat.  

I've read about BRCA testing since the 1990's.  Talked to my various GYN's about it.  I had a hysterectomy in 2004 and thought a bit about having my ovaries removed...but didn't.  Right before I moved to Texas a GYN I was friends with encouraged me to get tested and I even got the number of a teaching hospital's genetics department to make an appointment.  But did I do it?

no.

Because I was scared


I was scared my insurance wouldn't cover it
I was scared it might be used to deny me coverage as a pre-existing condition

But most of all I was scared...they might find something.


So for years, I went for my yearly gyn check up
as well as a yearly transvaginal u/s and mammogram

and honestly? I even missed a few years.

yep.

I kept thinking, maybe I was fine.  I didn't want to know.

My head was firmly stuck in the sand.


So when I moved to Texas and had an appointment with my new gyn, she readily made me a referral to cancer genetics who scheduled an appointment for me.

I figured it was time to just get it done and over with.

So I went.

Yes...I was positive.

A few things I did not know:

1.  Insurance does cover testing and if you know the specific mutation it's only about 400.00

2.  Health insurance cannot use genetic testing as a pre-existing condition,  although
life insurance may.

3.  By the time a ovarian cancer is detected by u/s or exam it's generally a stage 3-4 tumor.

4.  Genetics does not discriminate.  It can be passed equally by mothers and fathers.



So for everyone out there who has a family history who is scared of testing.  Please know...I feel you.  I do.  I was once you too.

While discovering cancer during a preventative surgery sucks.  Finding out ignoring it until I had symptoms could have been ...deadly.

I have 3 kids.  I want to be around to torment them for years to come.  Cancer could have stopped that.

WHOA.

So if you meet any of the following criteria please consider meeting with a genetic counselor.

I beg you.




Criteria for testing

  • Breast/Ovarian cancer diagnosed before age 50 years
  • Cancer in both breasts
  • Both breast and ovarian cancers in the same family
  • Multiple breast cancers
  • Two or more primary types of BRCA1- or BRCA2-related cancers in a single family member
  • Cases of male breast cancer
  • Ashkenazi Jewish ethnicity


The life you save...may be your own...or your sisters...or your cousins.

But do it.




Remember...Knowledge is POWER.  


1 comment:

  1. I so completely agree. My finding out I was BRCA2+ (completely by accident) was the only reason I got an MRI which found my breast cancer at a very early stage. Knowledge definitely is power.
    http://larasgenealogy.blogspot.com/2013/11/how-genealogy-saved-or-significantly.html

    ReplyDelete