BRCA 1

Since I started my blog and have come clean about my latest and greatest adventure as a Darwinian Failure, the question I get most often is "WHY?". Why get a preventative mastectomy? What drove you to this extreme conclusion? So I am hoping this post will help explain it all...

I want to start off by saying that as much as I make light of the situation in my posts it was by no means an easy decision. And it was also a very personal one at that, so while this works for me I realize it wouldn't for a lot of other people. I recognize that this is not the decision most women would be comfortable making, and there is certainly a part of myself that is extremely sad to be in the position where I had to make a decision either way. However, that being said "thems the breaks kids" and the What-If Game gets us no where. Now that I have all the information I have, a decision must be made, and the preventative mastectomy + reconstruction had always made sense to me.

My prior experience with Long QT Syndrome definitely played a HUGE role in my decision. I think when you are young and healthy it is really easy to feel a little untouchable. We are bombarded everyday with stats about the role of our genetics and lifestyle, but unless you have landed on the wrong side of those numbers it is easier to pretend that those numbers don't apply to you. So when you hear odds like a 40-70% risk of cancer it is easy to tell yourself that you will end up falling in the 30-60% that will NOT be affected. But my experience is that I am ALWAYS affected.

I have not had the best of luck with the numbers game in the past. My cardiologists always says I am one in a million - and this is not because my sparkling personality dazzles him at each appointment. This is because everything that could go wrong probably has at some point. My condition is very rare to begin with, rarer still is that there is no family history of Long QT despite other family members carrying the gene. Along with being the only family member to have an active case of Long QT syndrome, I also have the added privilege of being highly allergic to all the medications used to treat it (hence the whole pacemaker thing). Then there have been all the other little flubs along the way; broken wires, blood clots, improper device programming, etc. the list goes on really. The old saying "whatever doesn't kill you makes you stronger" is definitely true, but these things sure can be ANNOYING.

Lately, things have been on the up and up, which has been a nice change of pace (ba-dum-bum a little pacemaker joke there for you). But I am very aware of what it is like for them not to be. All the experiences I listed above took place during a span between my final year of high school and throughout my 4 years in undergrad. So despite those many unfortunate experiences life goes on and you have to go with it. Life doesn't wait for you to get better, classes go on without you, holidays come and go, and the sun rises in the morning and sets in the evening. But for you things have to be put on hold or pushed back, because the other old adage that has always proved true for me is that "without your health you have nothing". Being all too aware of the consequences of bodily ills has made me hyper vigilant about my health, and has caused me to take a proactive approach whenever possible, thus making a preventative mastectomy done on my own terms look rather appealing.

The other conundrum I had to face are the limits and complications of Breast Cancer screening options with a Pacemaker. Having a pacemaker (ICD) means that there is kind of a rather large metal box in my left breast. I always tell people its approx. the size of your blackberry. This means I can never have an MRI and with all other screening options there will always be part of my breast that is obstructed from view. It is also possible that my ICD could be broken during screening. Not ideal, because whenever maintenance is required so is surgery. This is obviously something I would like to avoid, because although my record for surgeries has not been stellar so far (I am averaging about 1 every 2 years at this point) I am hopeful it will improve with time.

The final issue I have with screening is that it is very likely that one day I will go in for my regular scheduled screening and that will be the day that they tell me I do in fact have cancer. So in the end I will just have to do all of this anyways + chemo + radiation. I think anyone who has ever seen someone go through these treatments knows they are not pleasant, and I have decided that these are things that I want to avoid, and a preventative mastectomy is the very best option I have to ensure I don`t have to fight that fight.

So that friends is the long and short of it.No Boobs = No Cancer. This treatment is 90% effective, and that is a number I can get behind.

Love your favourite Darwinian Fail,
Krysten

6 comments:

  1. Best of luck to you with everything! Great for getting those odds in your favor. Life is precious, and you're protecting it as best as you can.

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  2. Thanks so much! I agree life is precious and I have a lot of living to do. So while this hasn't been an easy choice or an easy process, I know its the right one for me.

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  3. Thank you for sharing your decision with us Krysten. I can't imagine what you're feeling but I can tell that you're strong and courageous and you're going to have an amazing life and I'm so excited to "follow" you on your adventures. I wish you the VERY best of luck!

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  4. I am so sorry that you've had to go through this all :( I've got a history full of health-related problems too but hopefully I can keep them under control for the long-term [lupus, anemia, and currently trying to figure out GI issues- their best bet is IBS]... Stay strong and remember to keep smiling!

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  5. Wow. I just stumbled across your site and all I have to say is that you're an inspiration. I can't imagine how difficult that decision must have been to reach, but your attitude about it really is remarkable. Thank you so much for sharing that with us all!

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  6. You are SO very brave! My mother and her sister are/were breast cancer survivors. My doctor asked if I wanted to be tested for the BRCA 1 gene, but I haven't found the courage to do so yet.

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