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My BRCA2 Story.

My BRCA2 Story.

I was in my early 20’s. Our family was notified by the Clinical Genetic Research peeps that they had traced a genetic mutation back to my family. It was called HNPCC and it’s jam is Bowel Cancer. After Dad tested positive, I went in for my testing and I’ll never forget the day I got my results back: NEGATIVE - I was so elated, I skipped out of the clinic as though I’d been told I was IMMUNE to contracting any form of cancer, EVER. 

Plot twist – a couple of years later, I got a call from my Dad who, judging by his tone of voice, was calling to do more than chat about the weather. “So ‘they’ve’ found out that we carry another genetic mutation. We’ve inherited HNPCC from Dad, and Mum has a different one called BRCA2. It affects breasts and ovaries in ladies, and the prostate in men. I’m sorry darlin’, you’ll have to go and get tested for this one, too”.

Side note: Only recently a genetic researcher told me that we our family is quite the case study, in fact we are one of only 4 (FOUR) known families in the world to carry both mutations!! #weextra

Something in me knew that I had this one. Even my horoscope on the day that I was due to get my results confirmed my intuition. I wish I’d kept the newspaper clipping, but it went something along the lines of “While the news you receive will not be ideal, it will guide you towards your purpose”. Pretty deep, right? 

So there I was….in Melbourne, away from my family & most of my friends, in a shitty relationship with a guy who had zero emotional availability nor care factor about what I was dealing with, only to find myself driving away from the hospital feeling like I was totally done for. Shell-shocked. What now? What the eff now?

Well, let’s just say google copped an absolute hammering, and while we all know it’s not the best idea trying to seek comfort in the form of a square box – I’m an over analyser and have very little willpower when it comes to staying away from Dr Google. Aside from a glimmer of hope and positivity found on the pages of Pink Hope, by and large, the information I found certainly didn’t leave me feeling warm and cosy. ‘You may wish to reconsider marriage and children’, ‘You aren’t entitled to life insurance’, ‘Mastectomy’ ‘Hysterectomy’….’Cancer’, ‘Cancer’,  ‘Cancer’. Words and topics a girl in her early 20’s isn’t prepared to be reading! My inner dialogue went from 'I’m loving life' to 'I’m a liability', real quick. 

Yep, it’s fair to say that to begin with, BRCA2 consumed me. I sought advise from the clever people at Peter Mac Cancer Institute, and I gathered various opinions from Eastern & Western medicine. And to make a very long story incredibly short, I started to feel more comfy with what I could do to put myself in the best position moving forwards.

Even though living a clean life floated my boat already, I really honed in on what I could do to reduce the risk of cancer. Implementing simple things - eating clean, treating my body right, trying to reduce stress, eliminating exposure to chemicals in my environment in the form of cleaning products & skincare; basically just owning what I was putting into and onto my body. And while I was not yet in a pozzie to take more drastic measures, I felt comforted by the fact I was doing something.   

Now, I’m certainly no expert and believe that everyone finds their own ‘best outcome’ when dealing with a genetic fault, but why not do what we can do?! (without letting it taking over our lives!)

For me, it didn’t make sense to just roll with the punches and assume that it was all totally out of my control. And I admit for a little while I hated on people I noticed in the street, sucking back ciggies and clearly abusing their poor bodies, while a little voice in my head told me that I’d still be the one to get cancer, not them, nooooo - they’d probably live till they were 105!!! 

So after a while of see-sawing between feeling totally helpless and somewhat empowered, I found a happy place and started to really appreciate the fact that I knew. That I could be educated. And proactive. That I was LUCKY.

After my second child was born, I started to shop around for breast oncologists and plastic surgeons, and after finding the right fit, I booked in to get my girls off six weeks after weening my son. I said goodbye to my 3 year old daughter and 9 month old son & took my empty windsock boobs off to hospital for a risk reduction prophylactic mastectomy with immediate reconstruction. I had read so much about this operation, and spoken to a few friends who had undertaken similar operations. I feel so very blessed that I had an overwhelmingly positive experience. The procedure went smoothly, the recovery was quick. The operation took several hours, and my hospital stay was for 6 nights - which meant lugging drains around in a tote bag for a week as you can see in the very glam photos.

Hello new foobs...DVT stockings and drains. 

While I was very cautious to not do too much too soon once I returned home, I had a good range of movement in my arms, I could pick up my baby, and ever so gently put washing on the line (why I didn’t milk this one for longer I’ll never know), all within a fortnight of the operation. There are so many contributing factors, and my heart goes out to those who have had a rough trot with surgery. But, for those who are investigating undertaking a mastectomy & reconstruction, there are good news stories, too. (I’m so more than happy to provide info to any of you lovelies who are in the process at the moment - don’t hesitate to get in touch!)

Packing my tote bag for a walk around the ward.

People were shocked that I was going to such [extreme] measures - ‘you’re so young, and NOT SICK?!’. Granted, there are no guarantees that as a BRCA gene carrier you will definitely contract breast cancer; but I liken it to asking a friend whether they would like to go out paddling with me in shark infested waters....and tell them that there’s an 80% chance they’ll be attacked while we’re out there. Oh, and the severity of the attack is an unknown too – perhaps the bite will only require a short stay in hospital to recover, or it could be fatal. Who wants to take a chance with those odds? I thank my lucky stars that I was told how fraught with danger those waters were. It’s allowed me to make educated decisions and ultimately join team #previvor.  

'Gently' swinging into post-mastectomy life

Fast forward to now. I’m almost 35, 2 ½ years post op and in a great place. I recently launched my business (and total passion project!) Nuni Wellness, which aims to create better breast health and awareness through natural skincare products – Boob Oil, which is a luxe elixir for daily breast care, and a Scar Serum; which was developed to address my own post mastectomy under-boob scars after failing to find a toxic-free alternative.  

Given that BRCA2 affects the ovaries, too, my gyny has suggested that I undergo keyhole surgery to remove my fallopian tubes and one ovary. I like the idea of taking this precaution (in order to potentially prolong a full hysterectomy), and mainly because I really want to be around long enough to know my great grandbabies, just as my Nan has done, so Mission: Tubes Be Gone will be taking place in the near future. I have to admit though, removing my reproductive organs is a lot tougher for me to get my head around, and it’s a decision I’ve been procrastinating over for a year or so now. More on that to come.  

With love & happy boobs, 

Dayle