Thursday, 9 February 2012

Thankful Thursday and the Truth about BRCA

The internet is a strange and wonderful place, isn't it?!

Since I started sharing my story and my struggle I have been embraced by an amazing group of people - many of whom who live in my computer. Words cannot express what it means to me to read all your comments, emails, tweet, and messages. People who I have never met have taken time out of their day to write me, to ask questions, and send messages of support. It is truly overwhelming to wake up after a day like yesterday to an inbox chalk full of LOVE. So THANK YOU! This has been a tough road and a long year. And it has been even tougher now that reality is setting in, and it means so much to know that you guys support me so whole-heartedly. So to all my blog-o-sphere friends and in real life friends...

 "Thank you for your unwavering love and support! I promise I will make you proud!"

When I started this blog way back in April, I started it thinking that no one would likely read it. But with the hope that maybe, just maybe, another woman who was facing the same struggle might stumble upon it one day. Or that maybe someone with Long QT, might find it, read it, and see that life gets better, that you will get better. And that in some tiny minisucal way I could help. The truth is though that this blog has helped me in more ways than I can ever properly articulate. This little virtual world has been a huge source of comfort, support, and motivation - all things I am truly grateful for.

But I wanted to share my story, because I wanted women (and men alike) to know the truth about these conditions. And now that all you amazing folks are reading and watching I feel like I owe it to you all to answer your questions and share my experiences to say thank you for all of the support. So let's get truthful, shall we? These are a couple of the questions that have been emailed to me this week.

Question: What are the chances that you will actually get cancer if you are BRCA positive?
So there is no guantee you will get cancer. And as far as I know I do not currently have cancer. But my risk is a lot higher. I want to stress that actually. So for the average woman your chance of developing breast cancer at some point in your lifetime is 30%, as breasr cancer is the most prevalent form of cancer among all women. If you are BRCA positive your risk jumps to somewhere between 50-70% (with some studies suggesting stats as high as 80%). The question for women who are BRCA positive is which side of the numbers they see themselves falling.

I confess that I am not a glass half-full kind of girl when it comes to my health, so I would rather act preventatively and proactively. I see myself in that 50-70%, so I would always wonder. And I would regret choosing to do nothing, if and when that diagnosis came.

Question: Why do you have to get rid of your nipples?
Ha! Okay so this question made me laugh, because I definitely spent way too much time asking this very question. So the full truth is that if I really pushed the issue, then I probably could keep them. There are nipple-sparing procedures. But it isn't what they reccommend. If you are willing to get rid of your boobs why are you so fussy about your nipples?

The point of a preventative mastectomy is to try to eliminate as much potentially cancerous tissue as possible, the nipples being part of that mix. I gave a lot of thought to this particular matter, because I am still a slave to vanity - but my surgery is already complicated. The pacemaker thing is already an added component, so I decided to give up the nipple dream.

I am gonna take this one step at a time. And if I really miss them then there are lots of nipple reconstruction options out there. I can't really fathom it right now, but give me some time to heal and we'll come back to this topic in a few months!

Question: What are your feelings related to your surgery and the occurrence of post surgical breast cancer?
So this is an interesting and important question, because like everything related to cancer this is not a cure, it is a treatment. And until we have a cure there are no grantees. The preventative mastectomy has a proven 90% success rate, and from a statistical stand point is the unequivocal front runner for women with a positive BRCA diagnosis.

The preventative mastectomy is effective, because it removes all of this potentially cancerous cells. No Boobs. No cancer. Simple, right? There are still residual cells left behind as part your chest wall, however, and this is why this treatment is not 100% effective. Those cells cannot be removed, so there is still a 10% risk that they may at some point become cancerous.

So my decision is all about the numbers. My risk is lower than the average women once I take this step. And if I end up among the very unlucky 10% then I will have to face that challenge when the time comes. But there will be no "What ifs" for me. I will know that I did everything I could to ensure that I stayed healthy, so I will face that challenge with a clear head and a clear heart.

There have been lots of these lately and I am happy to talk about this stuff. I wouldn't blab about it on the internet if I wasn't. So keep you questions coming, and I will keep answering!

Love your Favourite Darwinian Fail,
Krysten

5 comments:

  1. and no blabbing here :)
    THANK YOU for making the time to share your wisdom.


    xo

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  2. That was super informative. Thank you for sharing. You are such a strong woman! I admire your strength, knowledge and willingness to share both your personal story and knowledge with the world!

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  3. I didn't know about the nipple thing. Guess I never thought about it. Appreciate all of the info!

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  4. I really appreciate being educated on this because my cousin had this procedure done after finding herself BRCA positive and I had never heard anything about it until then.

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