Saturday, 21 January 2012

Finding my new "friend"...

Well then, here it blog! I have no idea of the format this will take, who will read it, if indeed anyone. All I do know is, I feel compelled to write, compelled to keep a record of how I'm feeling, the decisions I make, the decisions I don’t make, the effects of the aforementioned decisions on my life, that of my family, friends and work colleagues. 
So, if you are reading this, I guess I better keep my promise and actually give you something to read!
As you can see from the title, this blog is about me and my “friend” BRCA.  The title does have an air of sarcasm about it you must understand.  For BRCA is NOT a friend at all, nor an ally, associate or even co-conspirator.  It is in fact a foe of the highest accolade; my arch enemy, my nemesis and literally, a mutant.  Being BRCA 1 positive means I have a faulty gene.
We all have the BRCA gene, but in people like myself the stupid fault, which I inherited from my Granddad (completely NOT to blame!) it doesn’t work properly, which as a result of said fault puts me at a higher risk of developing Breast and Ovarian Cancer.  (To put it into figures for you, my risk of developing Breast Cancer is 85% and Ovarian Cancer 40-60% - Nice odds hey?!) And it’s as simple as that.  Just like the genes we inherit determine such things as eye colour, hair colour and height, so BRCA determines our risk of developing the disease.
So how did I find out such news?  There was a strong family history of female related cancers in the family. (I won’t bore with too many details), more recently, my maternal Aunt.  She developed Breast Cancer aged 42, and again 18 months later.  She was the first in our family to be tested for the faulty gene...positive.
Fast forward 10 years to when I was 30.  I had this niggling thing at the back of my mind; it really was like an itch I couldn’t scratch.  Only one solution, I needed to have the test, I wanted to find out if I was also at risk.  Again, I won’t bore you with all the details but as you may have gathered by now, I tested positive, and so did my mum.
So to deal with the news...What’s a girl to do? So many options - preventative surgeries? No way, I didn’t need it or want it!  Do nothing?  Nope.  To me personally, what was the point of having the test if I wasn’t going to do anything with the information? Annual screening? Yes please, that will do me!
So the plan was to be screened using MRI annually for Breast Cancer and a scan and blood test for Ovarian Cancer.  I learned quickly how to be breast aware.  If there was any change, I wanted to be one step ahead of this sucker!
Mum was also being screened and had been for the previous 10 years.  Then – BANG!! 6 months after we had our BRCA results, in October 2005 mum was diagnosed with Breast Cancer.  This was a massive shock, of which we were not at all prepared!  But we had to concentrate on ridding mum of this invasive, unwelcome parasite.  Lumpectomy, Radiotherapy and Chemotherapy along with hair loss, tiredness and a stalwart determination to beat it, all helped a successful victory over Breast Cancer.    
For me, that was enough to make one of the biggest (yet not toughest) decisions of my life.  I had to try and eliminate my risk of Ovarian Cancer.  So, at the age of 31 on April 16th 2007, I endured a lengthy operation to remove my ovaries and womb.  I was lucky enough to be blessed with a beautiful boy, Dylan, aged 7 at the time.  I knew I didn’t want any more children.  I can’t even remember being in turmoil over having made such a big decision. 
So that was that, I was relieved that the risk of developing one of the hardest cancers to detect had now been extinguished.  Ok, so I couldn’t have any more children, but I would be around for the one I did have, and to me, that was far more important.
I am conscious that this is turning more into an autobiography than a blog, but at the risk of boring you out of here, this is stuff you need to know to understand where I’m currently at.
In 2010, just a few months prior to mums 5 year anniversary of being diagnosed, we discovered the Breast Cancer had returned.  I’m so very glad to say that again, she was successful in defeating the disease.
Until recently I have declined the option of radical Breast scared the hell out of me!  However, I have now changed my mind.  I hope to undergo surgery (Prophylactic Bilateral Mastectomy with Immediate Reconstruction) later this year.  I am currently awaiting an appointment with a great surgeon based in Manchester.  I have chosen to travel away from my locality for this procedure as the surgeon in Manchester performs the type of procedure I would like.  So there you have it, and that, believe it or not, is a long story cut short!
My aim for this blog is to have an avenue to pour my feelings into during the next few months as my operation approaches.  And to give anyone reading this, an understanding of some of the options, hurdles, and sometimes ignorance we BRCA’ers face.  If just one person has a better understanding of what being BRCA positive means, then it will all be worth it.  xx



  1. Michelle, Thank you for sharing your journey. Happy to hear your mother is doing well. Did she decide to have a bilateral mastectomy or is she still practicing active surveillance? I went the same route and nine years after finding out I had the BRCA2 gene, I was diagnosed with Stage 2A invasive breast cancer. I applaud your decision to make a preemptive strikes.

    Wishing you continued good luck and success with your blog. Would love to have you post your story on Beyond the Pink Moon. Every time you tell it, you have the potential to save lives. Well done!



    1. Hi Nicki,

      Thank you for your comment. Last year my mum had to have mastectomy and Lat Dorsi recon on the BC breast. The last November she had PBM and recon on the "good" side. So far so good! :-)

      I posted a link to this blog on Beyond the Pink Moon, it's such a long story!

      I'm sorry to hear of your diagnosis, what stage are you at now?

      Thank you so much for your support.

      Best Wishes
      Michelle xx

  2. Thanks for visiting me and posting the link to this page of yours! It's nice to know we aren't alone... Keep blogging, and I'll keep reading :)