Location: Hawke’s Bay, New Zealand
Instagram username: @alysesdailylife
In 2008, age 15 my whole family travelled to Waikato Hospital for a family genetics counselling session. It had been discovered that my paternal Nana had the BRCA1 gene mutation and her children were able to be tested. My dad did just that and was also found to be positive for the mutation. In New Zealand you must be 18 to consent to genetic testing so fast forward 3 years and I could consent!
I was 19 when I finally got a genetic counselling appointment to get the blood form I needed to find out my fate. I was studying beauty therapy at the time and after 5 months of waiting on results, I got impatient and called the genetics counsellor on our lunch break and within 2 minutes I was an official member of the BRCA club. At the time, I’m not sure I truly grasped the implications of it and for a few years carried on as normal while still attending specialist appointments screening me for breast and ovarian cancers. Now 6 years on, while the surveillance continues it’s become apparent I have to seriously consider the future of these body parts and how much longer I can risk keeping them around.
I think the reason it’s taken so long for the reality of this situation to sink in, is due to the fact BRCA hasn’t exactly affected my family in the “normal” BRCA fashion. Sure, my dear nana, while she suffered from cancer on more than one occasion, she lived to 89, which is pretty amazing considering all she had been through. So, I guess until now I have been lulled into the false sense of security that was having the members of my family in the BRCA club all alive. Sure, they weren’t always well, but they were always there. I also think that when I was 19, turning 30 seemed so far away. 30 being the age by which I should have preventative surgery, if I’ve not already. But now that number is getting closer I can hear the time bombs upon my chest ticking away and it has become all too apparent how real and fast approaching 30 is.
Realizing that my life isn’t exactly going to turn out how I’d hoped has been a tough pill to swallow. Spending my 20’s contemplating when to get rid of my boobs and likely my 30’s getting over them being gone, is going to make for a busy 5 years, in which I also need to squeeze in all the other normal stuff 20 somethings do.
There are many things to consider when you are faced with the news you have a gene mutation that will more than likely wreak havoc on your life had you remained unaware of it.
Right now I am contemplating a double mastectomy and DIEP flap reconstruction. With an 85% life time risk of developing breast cancer, it would be mindless to do nothing, but that doesn’t mean signing on the dotted line, consenting to the diffusing of these time bombs will be easy. Before my DNA testing I had so many plans in mind for my life and growing up I didn’t fathom major risk reducing surgeries to be part of the plan, but as the saying goes “life is what happens while you are busy making other plans” and I guess this is just life.
So while my journey is really only just beginning and there is a long way to go, I still wanted to put down in words how it’s been going so far. There are many like me who have this BRCA mutation and all of us are at different stages, so this is me and where I am at. I would love to hear from you, so if you have any questions or just want to yarn, do get in touch. Much love xx
Any resources that helped you with your treatment:
Pinterest- I am always pinning motivational words, in fact any words that help to define my feelings.
My family- Couldn’t ask for a more supportive bunch.
My partner and our friends- they let me drivel on about boobs and all the novel ways they can make new ones these days, you guys know who you are and I am grateful for you xx.
I love Instagram- it’s where I found Dani and these breasties and it’s is comforting to know you aren’t alone no matter your journey.
The Gift of Knowledge- they provide information and support to New Zealanders impacted by hereditary breast and ovarian cancer. http://www.giftofknowledge.co.nz/Home/