Tuesday, May 28, 2013

ovarian cancer part II

It's been almost two weeks since the news came out that Angelina had a double mastectomy after finding she had  the BRAC 1 gene.  I have been thinking about this off and on over the last few weeks and I am angry!   Still!
  It breaks my heart that because she is so wealthy and famous her challenges are news.   Yes she is drawing attention to a problem in America and around the world...but she is also not making it any easier for the rest of us that are left to wonder if we have the gene.
Yes I know I am being petty...but my life is as important as hers. To my husband, to my kids, to my family and friend I am important!  It doesn't matter how much money you have or you know when you are sick or dying...but those things get the coverage in reality...so the rest of us sit and wait for the cost of genetic testing to come down.
grrrrr....I feel just as angry writing this as I do thinking it...it makes me feel sad that I feel this way...but I do.  

Wednesday, May 15, 2013

Ovarian Cancer...still chasing me

Why is that every time I start to feel comfortable with my decision not to spend $3400.00 on genetic testing something comes along and makes me reconsider?   All over the news is the headlines that Angelina Jolie had a double mastectomy after finding that she was a gene carrier for BRAC1.   She also plans to have her ovaries removed.   I applaud her decision...she is bringing attention that really needs attention.   Far too many women die of ovarian cancer because it is so silent in it's approach...you have to be very advanced in the disease before most symptoms are present or felt.   I am distressed that so many women like myself know we are at risk and can't afford to do anything about it.   Ms Jolie has the money for genetic testing and then the "elective surgeries."
I know as the daughter of a deceased mother who lost her battle to ovarian cancer that I walk a fine line everyday in knowing what my risks are.   I am not as informed about my body as I would like to be...but I am way more informed that most...I have blood tests done every year that determine if I have developed any cysts or growths in my female organs.   I also have a pelvic ultrasound annually to determine if I have anything that the test didn't see.  Then I get to wait for another year to pass before I do it again.  Sometimes I pay for these tests out of pocket...because insurance doesn't see them as necessary.     I do however, for piece of mind and as Ms. Jolie put it...For my Family.
I don't want to be unprepared.  This disease may never get it's clutches on me...but not knowing if I have this horrible gene mutation isn't just about me...it's about my families chances.   My children are as likely to develop this mutation as I am...they not only lost a grandmother long before they were born they lost an Aunt to breast cancer just days after my son was born.   Putting them at a much higher risk of developing this disease.  Also at risk are my cousins...both male and female...because you don't have to have ovaries to develop breast cancer...just breasts.   My brother is at risk as well as his child.   It leaves much to chance by not having the genetic test.
My last insurance company informed me that I would have to be diagnosed with some form of cancer before it would pay for my genetic testing...doesn't that seem a little strange.  I have to get cancer before they will allow me to find out if I am at risk of developing cancer.
For me this isn't just about what I can't have...it's about what risks I am taking and I know that the insurance company won't turn a profit if they give into everyone's demands but I don't believe that insurance companies should be for profit.  It's about doing the right thing...and in this case I feel like they are definitely not doing the right thing.
I know I sound like I am just ranting...but this just doesn't make sense to me...

In case you haven't read about Angelina's story here is a link http://www.nydailynews.com/entertainment/gossip/pitt-jolie-absolutely-heroic-article-1.1343623