This post will be about what exactly someone who is BRCA positive does, or rather what is suggested they do. I know some who read my blog have been there, done that...but then there are many who didn't hear the term BRCA until me - and I know the first thing that many wonder what happens after the results. Many have questions about it that they are afraid to ask...because, well, it may be embarrassing or just not an easy thing to talk about. So I hope to make it plain and simple :) Especially after I accidentally saw a picture on Pinterest a few weeks ago, of a woman who had a mastectomy - and she had no nipple. There, I said it! That sent me into a complete internal freak out - it may sound immature to say this, but I wish I never saw that picture. I had bad dreams for many a nights after that. In my head, I had thought a mastectomy was literally like taking the stuffing out of a pillow...nothing looks different on the outside. Then you stuff the pillow with some fake stuffing. Make sense?
When a woman is diagnosed as BRCA positive, her chances of developing breast cancer in her lifetime are up to 87%. Therefore, many BRCA positive women choose to have a double mastectomy - removal of both breasts. A mastectomy is the removal of the whole breast. There are five different types of mastectomy: "simple" or "total" mastectomy, modified radical mastectomy, radical mastectomy, partial mastectomy, and subcutaneous (nipple-sparing) mastectomy (from breastcancer.org). More complete descriptions can be found at http://www.breastcancer.org/treatment/surgery/mastectomy/what_is. Can you imagine what you would do? Take a minute or two to really put yourself in those shoes.
If a woman chooses to have a mastectomy, she can either 1) get breast implants 2) have fat from her tummy used to make new breasts (I forget what the technical term is) 3) no reconstruction. It is a very personal decision and one that everyone is entitled to their own opinion about, and I am going to share MY opinion and how I feel - I am not a medical professional so I am sure I may say something incorrectly, so I apologize if so - but I am explaining it the best I know - and in the simplest terms :)
It is also suggested that women have both their ovaries removed, since being BRCA positive also highly increases a woman's chance of developing ovarian cancer. This is called a bilateral oophorectomy. So, now someone is faced with having two of the things taken away from them that make them a woman? Again...what would YOU do? It's hard to even think about it when you are so far removed from it, but now I have to think about it knowing I have a 50% chance of having to make this decision. It is just really difficult to process.
Of course, the above are suggested options, and every woman's situation, family history, health, etc. is different. The other option would be to not have either of the preventative breast or ovary removal surgeries, and to just monitor their breast/ovarian health very closely with regular screenings: mammograms, MRIs, ultrasounds every 6 months to one year. And for ovarian health...I've been told that the blood tests and ultrasounds for it, are really not 100% accurate. But, like I said, monitoring it rather than removal is of course an option. The negatives of monitoring...well, I think are pretty clear. You could be the small percentage of BRCA positive people who never develop cancer (they obviously have to exist!), or you could develop cancer - I know how I am and I would constantly beat myself up for not having preventative surgery. I actually came across a blog recently about a woman who that happened to. And it was heart wrenching to read. I could sense the extreme pain, sadness, and regret through her writing. It really made me think.
Please take 2 minutes to watch - "Decoding Annie Parker" trailer
And me...MY stance on it - it has changed a few times: Before my mom was diagnosed as BRCA positive, and it had merely been a distant "what if" - my instant (and not well thought out) thought was, well I'd probably have my breasts removed and "just get some new ones." I hate my tummy anyways, so maybe they can take some fat from there and give me a nice tummy tuck, too! This is when I thought breast removal was like the pillow stuffing example I gave earlier. And yes, I do feel like an idiot for not realizing what exactly a mastectomy was!
Since my mom was diagnosed as BRCA positive, and I now know my chances of inheriting it are 50/50: After all the research, stories I've read and heard, hours upon hours of time I've had to truly realize all the physical, emotional, and mental stress/trauma a double mastectomy can have on a person...I nearly lose my breath thinking about it. I have had many moments of sheer panic and anxiety, once I realized just what exactly a mastectomy is - and saw photos. I know that sounds dramatic, but....take a moment and look at your chest. Those two things make you a woman. They are part of YOU. You wait years to get them when your younger...and then they can be taken away so quickly? You have a love/hate relationship with them...they are too small, they are too big..Sure, they are "just" a physical outward appearance, and what is most important is on the inside...blah blah blah. Well you know what, I like them and I don't want them to go anywhere! I also learned many women lose their nipples during surgery, often they aren't able to be saved. I cant imagine what I'd feel not seeing what I see now everyday. I feel terrible saying all this because I know there are women who do face this every day. But I am sure they felt the way I do right now at one point. And of course you cant help but think what a future husband would think. Women who are going through this who are already married are fortunate to not have to "explain" any of this to new boyfriends. How would I even begin?? Its hard enough to type about this stuff....let alone talk about it to people....let alone talk about it to a MAN??! This may sound so superficial, but any woman would be lying if she said she didn't think about that. I am just saying it out loud :)
Anyways, as of right now, my decision would be to NOT have preventative surgeries anytime soon if I am BRCA positive. That doesn't mean I won't in the future. I just don't believe that I have the strength to make that drastic decision to remove my breasts and/or have my ovaries removed at 32 years old. I have tears coming down my face as I type this. It makes me angry, it makes me think how unfair life is, and how many unfair cards I feel I've been dealt...and I really don't want to be dealt this one. I am a positive person, I am the one my friends know can always the positive spin on a bad situation. But this I cant lie - it makes me angry that my mom has cancer for a second time, that she also is BRCA psotiive...it makes me angry I even have to talk to someone about ovary removal, when i haven't even had kids yet. I am the girl who has dreamed of being a mom since I was a little girl, and I never thought id be the one in my 30s without kids yet. And now I may have this roadblock too?? Roadblock as in - if i am BRCA positive, I now have to consider whether i'd want to risk passing on the genetic mutation to a child. The other roadblock would be potential ovary removal. Why? Such is life! (I do have a blog entry written on this, that i may post tomorrow). I have had many pity parties with me, myself, and I over the last few weeks. I do know the positive spin out of being diagnosed as BRCA positive - is that you are blessed with the information to potentially save your life. But it will still plain old suck. Right now, I feel testing and monitoring would be sufficient for me - for now.
I am pretty sure by age 40 though, I would opt for removal. Weird and random thought...I cant help but already think about the fact that I'd be the type of person who would hate the feeling of implants and would probably be so sensitive to the feeling of them and want to rip them out! That is just me and my personal opinion. I am sure my words are offending one person or another, but this is how I feel and I want to be able to document it. And even though I feel very adamant about my feelings in this moment, I am aware my decision may change once I find out my test results.
But of course, first and foremost in all of this is my mom, and trying to help and be there as much as I can while she undergoes her chemo treatments - and keeping positive, fun, and laughs around! So as always, please keep her in your thoughts and prayers. Instead of always wondering why my mom has cancer again, worrying, or being angry about how unfair it is, I am trying to not focus on that because its something I, or anyone, obviously cannot change. But I may have the opportunity to change - or rather, control - my future health. Whether this BRCA mutation is in my DNA or not...I can't change so there is no use being angry or confused about it....because I was born this way. :-)
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