My genetic counsellor (Debbie) told me to bring someone with me to the appointment and that regardless of the result it can still be a very emotional thing to experience. It was a Tuesday and my mum came with me.
Debbie asked how I was and how I’d coped the last few weeks. Then she asked my mum. She followed it up by saying that she was very sorry but I’d tested positive for the BRCA1 gene.
I didn’t really feel anything. Like, isn’t this what I’d been expecting? What I’d been even ‘hoping’ for?
When I looked at my mum, she was crying. She felt responsible. Of course she did.. I’d inherited this gene from her. But in no way was this her fault! After seeing my mum’s face, I started crying too. I was more upset for my mum than I was for me. Now with her knowing I’d got this gene from her.. was I going to feel this way with my children one day? Probably. But that would be future Astrid’s problem. What a strange way to think..
Debbie pushed the results paper across the table to me. I read that I had inherited the BRCA1 gene mutation. I read it over and over and over and over. I didn’t want this! Why did I ever tell myself that I wanted this?! To protect myself, which in hindsight I think actually may have worked a little. It never came as a shock. I felt fully prepared to receive the news that it would be positive. And I mean, I’d had 9 years to prepare for this news.
Now, almost 4 years later I still feel like I coped pretty well with that news. The next few months were a whirl of specialist appointments, scans and testing. My very first MRI revealed that my breasts were ‘riddled’ with cysts and in particular quite a large one on the left side which needed a biopsy. Thankfully it came back benign. I have MRI’s yearly and in between, every 6 months I have a physical check done by the specialist. I check myself monthly. Once while laying down in bed and once while standing in the shower. It is so important to check your breasts while standing and lying down as the shape changes and moves and you could feel a lump in one position that you wouldn’t in another position.
My next step is one day to have a complete double mastectomy and reconstruction as a preventative measure. I wanted the opportunity to breastfeed before I did that so here I am now, 37 weeks pregnant. I’m not 100% sure when I’ll get the mastectomy as it’s a fairly large thing – whether I’ll wait until I’ve had all of my babies or do it somewhere in between. That’s something I have to think about. When I turn 30 my risk for developing breast cancer increases dramatically so I have start thinking about this seriously and soon as I’m turning 29 in February next year.
Anyway, that’s my BRCA1 gene story so far! I don’t think about it much. I know some people it plays on their minds constantly when they find out the news that they’ve tested positive. I’m not sure whether with me I’ve put it out of my mind deliberately or if I genuinely am just coping fine. I guess we will soon find out when shit starts to get real once I make the decision to have the surgery!