Finding out ...

8 days since I found out I have a BRCA1 mutation…..

In most ways, nothing has changed. It’s been a lovely week. Sunshine, beach walks, swimming, laughter with the family. Sports day! 

And in other ways, it’s been weird, slightly disturbing, odd. Rather confused.

I found out in January there was a BRCA1 gene abnormality in my family (: http://en.wikipedia.org/wiki/BRCA_mutation). My dad was tested October time but he hadn’t mentioned it then - life was pretty stressful as was.

When dad gave me the letter from the genetics team in January, I was feeling pretty shocked. His words of caution early last year of “another one of your cousins has breast cancer, you should ask for screening” didn’t really phase me. Around 1 in 7 women get cancer at some point in life, so two cousins didn’t seem really indicative to my risk.  But, there it was in writing, a letter inviting me to genetic testing. A letter explaining that there was a recognised mutation to the BRCA1 gene in his family - which, unfortunately he had and therefore I had a 50% chance of having too. A few google searches told me that if I did share the same mutation my risk of breast and ovarian cancer were much higher than I thought. Individuals with a BRCA1 mutation are predicted to have a 5 times higher risk of breast cancer, and a risk of ovarian cancer 10-30 times normal.

Testing isn’t compulsory. I could have taken that letter and thrown it in the bin. No one would have chased me. 

But I chose to find out. Because in my mind, when you’re facing cancer, knowledge is power. Although it’s uncomfortable finding out that your risks are massively increased, you also open the door to a range of preventative options, or more regular screening. 

It took around 4 months to receive an appointment letter from the genetics team, and I then had an appointment scheduled for the end of May, just before my birthday. A 5 month wait in total - pretty mad. I had a couple of health scares during that time that thankfully amounted to nothing but I became uber aware of my body! 

The counselling appointment went smoothly. My genetic counsellor, Anna spent time running through my understanding of the testing, the possible outcomes etc. There was very little covered that I hadn’t had a chance to mull over and research in the 4 months prior! I had blood taken straight after, had a little emotional wobble, and then carried on life as usual again. 

Three weeks later, the phone call. Anna called at 1730 on a Monday evening. As soon as she called, I knew. Thankfully real life CRAP situations don’t call for the kind of X Factor 30 second pause situations. So there it was - I got the wrong side of the coin. I have a BRCA1 mutation. 

I let my husband and some close friends know immediately. I am so tremendously grateful for the support they gave and give. I have been showered with cake, flowers and kind words! 

I honestly don’t know what the next few years at least hold. I’m considering all options seriously right now. Emotionally, I’m mostly feeling extremely grateful - grateful to a cousin I’ve never met for pursuing the family genetics, grateful that I live in a country with a free health service and grateful preventative surgery is possible. Grateful for friends and for family. But sometimes, fear and sadness creeps in - fear that I’ve passed it on to our children, of possible surgery, of cancer, of ill health, of not being able to feed my youngest daughter to term. 

So, this is the beginning of this journey. I’m still me of course, but with added complexity. Sigh.