Well, here it is; the obligatory “welcome to my new blog” post! I started this blog to journal my way through the next year (at least), as I face my BRCA2 gene mutation head on, and hopefully become a stronger and more empowered person in the process. But first and foremost, a huge “thank you” is necessary — for taking the time and come look at this… it clearly means that you’re someone of importance to me, and someone that I want on this crazy journey of mine that’s been going on for about 5 years, but is about to go full force. Besides the fact that writing has always been therapeutic for me, I know I will want to look back on all this one day and will be glad I documented everything. I can’t guarantee it’s all going to be pretty, but I’m so grateful to have you along for the ride!
So I feel like there is a lot of explaining to do to get to where I’m at now, so I’ll do what seems most logical… start from the beginning. But before I do that, a little bit of history and necessary “about me” basic facts. They may seem a tad random, but trust me, will be important later: I am the youngest in my family and have one brother who is 3 years older than me. My Mom comes from a family of four siblings, my Dad has one sister – my Aunt Peg. She has 2 children (my cousins), one boy, one girl. So there’s our basic family tree… got it? And for the record… not just a family tree… they’re some pretty amazing “leaves” if you will!
We have no known history of breast or ovarian cancer in my family, and had no idea that there would ever be a genetic tie to cancer that we could carry. That is, until 2008. My Aunt battled (and conquered!) breast cancer at a relatively young age (45), and eventually was approached to be tested for a BRCA mutation (what the news loves to call “the breast cancer gene”). To everyone’s surprise, she came back BRCA2 positive (For more info on the BRAC Analysis test and the results: https://www.myriadpro.com/test-offerings/genetic-testing/bracanalysis). Often when you hear of positive results, no one is surprised as there is a huge long run of cancer in the family. Well, we like to be different, that’s for sure! We haven’t been able to trace back any other cases of breast or ovarian cancer. Knowing how the gene was passed on, my Dad was then tested for the mutation. For what it’s worth, I did not know he had been tested, nor that my Aunt was positive, until we got the results that my Dad was indeed positive. At that point my parents told me, and I was faced with the decision of whether or not I wanted to get tested myself, and if so, when. There is a lot of debate about whether or not young women should get tested, knowing that there isn’t much that can be done until the magic age of 25, making it a very personal decision.
So now we’re in the summer of 2008… August to be exact. I was starting my junior year of nursing school, which now seems like forever ago. I had actually learned about BRCA mutations in the semester prior to this, and as soon as I was told I could have the mutation, I immediately knew that not only did I want to get tested, but that I was positive. Call it a gut feeling or whatever you like, but I just knew. I have gotten asked why I wanted to get tested, and to me it was honestly never a question. I admit I’m a Type A, likes to be in control, kind of person, and I just couldn’t imagine not knowing. So I met with the same genetic counselor that my Dad had worked with, and Sarah was such a blessing. She walked us through the whole process, which admittedly is much of a blur at this point. I do, however, distinctly remember the phone call in which she told me “you were right, you’re positive.” And then seeing it in writing… well that will solidify anything. My actual results… the word “deleterious” is just so… real.
The last step after finding out my results was to see a breast surgeon to discuss what it all meant. As a visual person, here’s what it does mean. For what it’s worth, as you can read above, the statistic was an 84% chance of breast cancer before the age of 70 when I received my results… after more research it is now 87%. Yes, you read that right: eighty seven percent.
That appointment is also a blur, but what stands out in my mind is how we discussed the importance of having kids early (ouch! I know… just what every 20 year old wants to hear!) and to call him when I turned 25 to start surveillance and discuss my options at that point. Which brings me to now. For the past 5 years turning 25, and all that comes with it, has been in the back of my mind. It’s hard to believe it’s finally here… I wouldn’t call it bittersweet as some might think, but it is a big day. And hit me a little harder than I anticipated to be entirely honest. So tonight, after the best 25th birthday a girl could possibly ask for, I decided there couldn’t be a better time to start documenting my journey.
If you know me at all, you can only imagine the lists (and okay, okay spreadsheets…) I have of my possible options. While there’s always a chance things may change (life is funny like that!), at this point in the game, I am planning on having a prophylactic bilateral mastectomy with reconstruction later this year. Every study you read gives a different statistic as to what my risk is after the surgery, but it is inevitably the one thing that will drastically decrease my chances of getting breast cancer.
So now that today, my 25th birthday, is coming to a close, it leaves the next big date to face fresh in my mind– my appointment with the breast surgeon on February 18th to discuss all the possibilities and what awaits me in the future, both near and far.
Thanks again for joining me on this ride… I promise to share the highs and lows with as much honestly as possible. One last thing– I will inevitably cover a bunch of information on all this, but if you’re a Googler like me, here’s a couple fabulous sites to start with that have been invaluable to me: