BRCA-1

I have always known that there was a possibility that I was going to get breast cancer.  My mother had it.  Her sister had it.  Their mother had it.  One of their mother's sisters had it.  It has always been one of those things that I said, "I suppose I will be next."   I guess I will just get this out of the way... I don't have breast cancer.  But I do have a pathogenic mutation on BRCA1 that significantly raises my risk of not only breast cancer, but ovarian cancer as well.  Significantly.  What does that mean exactly?  For me, it means odds that I just can't be comfortable with.  I have two small children that I desperately want to see grow up.  And I intend to do that.

I was on visiting back home when I got the phone call from the genetic counselor.  Seriously.  I was walking out of Prejean's in Lafayette with my best friend and my cousin.  I made it to the parking lot before she got the words out, "Your test has come back with a mutation on BRCA1."  And I nearly fainted.  I had to sit down.  Immediately, my entire world changed.  How was I going to tell my mother?  What the hell was I going to do?  I went into testing 99% sure that if I came back with a mutation on BRCA1 that I was going to get rid of my ovaries.  But I hadn't really thought about my breasts.  I mean, I had considered a prophylactic mastectomy, but to be honest...I was sure that I wasn't going to have a mutation...so I didn't really consider it.  But there I was.  I tried to call Nate at work, but he was scrubbed into a case and couldn't come to the phone.  So I called my sister-in-law.  Within the first 2 minutes on the phone, she brought me down from near-hysteria with these words, "I am SO GLAD you got tested.  I am so glad we are finding this out now, and not after you have been diagnosed with ovarian cancer!  I am so proud of you for getting tested."

So by the time I was able to talk to Nate, I already had a plan in my head.  Do the surgeries.  As soon as possible.  Fast forward to a month and a half from then.  I have done so much research and talked to so many people.  I have met with women who have been in the same exact place as me.  These women have shared their experiences and have talked to me about what to expect from the surgeries.  I have had so many tearful conversations over coffee.  I've seen and felt a lot of reconstructed breasts in the bathrooms of coffee shops.

As I move forward with all of this, the vast majority of people have been incredibly supportive.  I started out telling a few people, my closest friends and family.  But I have found that the more I talk about it, the more comfortable I am with the idea of what lay ahead.  Surgery is scary, y'all.  And these are surgeries that are going to alter both the chemical makeup of who I am and the physical landscape of my body.  I joked with one friend that I am essentially going to be a neuter!  But that's just what I have to do.

And of course, I have come across well-meaning people who maybe haven't said the best things.  So as I continue on with all of this, here are a few things that I would like you to NOT say to me (and you should probably avoid with any person who is also facing this):

1.  Are you sure?  Have you thought about this?  Because I can assure you that YES I am sure and YES I have thought about it.  A lot.  In fact, I am certain that I have done more research on the subject and spoken to more experts on the subject than you have.  And not to sound like a jerk, but its my body and my odds.  So I don't really need to hear anyone else's skepticism with Western medicine.

2.  Are you doing this because of Angelina Jolie?  First off, I hope that the person that said this to me was joking.  Because its one of the most absurd things ever.  I don't know Angelina Jolie, so I'm not doing it because of her.  I'm doing it because I have an inherited genetic mutation that puts me signficantly at risk for developing breast and ovarian cancer.  Angelina Jolie and I may share this fact, but I can assure you that she in no way shape or form factored into my decision.

3.  When I express sadness over having to wean my 20 month-old son so that I can have a bilateral mastectomy, please do not belittle my sadness.  Yes, I understand that I breastfed my son for a long time and that he has gotten most of the health benefits already.  But you also must understand that extended breastfeeding is a parenting style.  I continue to breastfeed my son because it is an incredibly precious bonding experience...one that I will not be able to get back.  And I am pretty devastated over having to cut that short.

4.  Please don't assume that I am ill, because I am not.  I am taking action before I get ill.  After talking to women who have been through this and women who have been through breast cancer, I can say that I am 100% certain that I don't want to wait around to get cancer.  I am aware that I may still get cancer.  But my children can know that I did everything humanly possible to NOT get cancer.

I just need lots of love and support.  And maybe the occasional acknowledgement that this all kinda sucks.  If you have questions, just ask!  I am not shy about talking about this.  Its all new and weird to me, but I also think its important to talk about. There is a lot of information out there, and anyone who is interested, I am happy to point you in the direction of some excellent resources.