Hi all
I very recently received the news that I have the faulty BRCA2 gene mutation, got the phone call as I got home after round 3 of my EC chemo. I have 1 more round to go then 4x Paclitaxel. I was diagnosed with BC on 3rd Nov last year. Initially I found the lump back in May but they weren’t able to find what I could feel, sent me away and told me to come back if things changed. They did so back I went. Kick myself now I didnt go back sooner obviously but I try not to look back. My BC was ER+ PR+ HER2 negative. Ive had 2 lumpectomys, 3 sentinel nodes removed and thankfully all were negative.
My mum had and survived BC nearly 9 years ago, at the time genetic testing wasnt an option. Since then there have been a couple of new cancer diagnosis in the family and due to me being 39 I just qualified to get tested. I have 2 teenage daughters so these results mean a lot to us as a family. No we dont want to deal with this but for my girls its really important we use this info. Knowledge is power.
Well ive told myself knowledge is power for the last few days since finding out and I really was able to draw on all the positives. I felt like we’ve been given the upper hand here. I want to live a long life, as long as humanly possible. Knowing this fault can help me achieve this. And then… 3am comes around. Ive worn a bra top to sleep in thats a bit tight and I’m getting a shooting pain in my boob. Nothing unusual, I have had surgery and I am coming off my period which my boobs always kick up a fuss about. But the sudden realisation that my boobs could actually kill me. Not just because I have breasts and breasts get breast cancer but because I have this faulty gene. I can’t even think right now what it means for the rest of my body.
So I guess I’m here looking for reassurance again. Anyone that might have had a similar journey to me so far. I havent had a discussion with genetics yet and so I have literally no idea whats coming only that it means more surgery? Extra hormone therapy now instead of just Tamoxifen for 10 years? Are there specific questions I should be asking genetics or my oncologist?
I have had a couple of people reply to a post I put on a BRCA2 Facebook page but it’s not as popular a talking subject as id hoped. I want all the stories and all the answers straight away haha. I don’t know if it’s because it’s a fairly unique situation as such a small percentage of breast cancer is caused by this mutant gene, or because people that have had breast cancer, then find the wonky gene have had enough to deal with that they don’t want to talk about it anymore. Before this my cancer journey had an end date. Although id need 10 years of hormone therapy, once radiotherapy was done I could put it behind me. This gene means that there’s not really an end date. It has changed everything and I have to get my head around that. It’s a much longer journey now.