My BRCA 1 Test Results Are In…

Thank you so much for the love, prayers, good vibes, and support.  Last week I wrote about about my medical issues I am currently facing. (You can read about all the details of that here)  The short story is that I have fibroids and endometriosis to the point that I now need a hysterectomy.  I also went through genetic counseling and was being tested for BRCA 1 gene mutation because we know my father was a carrier and my sister tested positive.  That meant that I had a 50/50 shot of having it.  

We got my ultrasound results back since I wrote that post and now know I also have two, what they believe to be endometrioma cysts.  One adjacent to my left ovary and one in my left ovary.  Along with that I have actually have 5 fibroid tumors of significant size.  So there is more going on there than we thought.  We are now waiting or the biopsy results that I had done on Monday. 

Back to the BRCA 1 testing.  I have been waiting two weeks for the results.  Those have been the longest two weeks of my life.  Every time the phone would ring my heart would jump into my throat. Today I finally got the call.  I was getting ready to go work in my daughter’s classroom and I saw the number flash on my iPhone screen.  The first thing my genetic counselor said to me was “I have some good news”.  I immediately started crying happy ugly tears.  I tested negative for the BRCA 1 mutation, which is what runs in my family.  I don’t know why for some reason by the grace of God I was somehow spared from having this, but I was.  My genetic counselor said it was like a genetic coin toss and I came up on the extremely lucky side.  She did say that even though I tested negative, because it runs in my family, they have counseling services available to me to help with any feelings of guilt or wanting advice because I was spared and my sister wasn’t.  This is a very real feeling and it is good to know that there is help there if I need it.

I was mentally preparing for the fact that I had the gene.  I knew in my heart the decisions I would have to make with that, but the hardest part was the idea of having passed this onto my daughter who is only 7 years old.  The idea that she couldn’t be tested until she’s an adult and having to wait and wonder for all those years was what ate me up in side.  

My birthday is in 3 days.  Everyone around me kept asking what I wanted to do for my birthday and to be honest I didn’t even want to talk about it.  I was consumed and paralyzed by the “what if” that is going on with all these various tests.  I can now say that this is the best birthday present I could’ve ever received.  The results of the biopsy will come and the plans for surgery will continue, but the idea that I didn’t pass this cursed gene onto my daughter is the best present a mom can get.  

So what now?  When the biopsy results are in I go for the surgical consultation, which my doctor believes will be the removal of my uterus and left ovary, but now that I tested negative for BRCA 1 I get to keep my right ovary and not have to deal with surgical menopause of hormone patches.  So while a hysterectomy and losing one ovary is not ideal, I am so thankful it isn’t more.  

Again, I made the decision to share my story because when I was searching the internet to find someone who has gone through this and I found very few people telling their story.  Women’s health issues are very real and I think talking about them shouldn’t be taboo.  Education is so important when it comes to our health.  If me sharing this personal journey helps even just one person than it is totally worth every tear I shed while writing this and feelings of embarrassment that I push to the side.  Know your family history, get checked often, and be aware of your body.  Again, I ask for comments to be gentle and I thank you for your good vibes.