Hi everyone,
I found out yesterday that I'm BRCA2 positive. I was tested after my half sister was found to be positive.
I feel pretty shaken. I was expecting the result to be negative as fortunately my half sister's children and my brother's were negative.
My half sister is 20 years or so older than me (I am 32) and she had aggressive breast cancer when she was my age, which is mainly what is making me feel scares as I'm now worrying about what's going on inside me. I'm not 100% sure what I'm looking for when i check my breasts and don't trust that I will find something if it's there.
Anyway the genetics counsellor did obviously tell me information yesterday but I hardly remember any of it because i was in shock. She said that she will send me and my gp a letter with the result.
I don't know what happens next though - will the genetics counsellor make referrals for me now for MRIs etc or is this something I have to sort out with my gp? How long should I expect it to take to see anyone? I'm just worried because collectively my gp and Oxford genetics already delayed my referral for the BRCA2 testing due to admin errors which wasted a lot of time - and because of my sister having such aggressive cancer at my age makes me feel like it's all a ticking time bomb.
I would really appreciate hearing about what people experienced and how it all happened in the first few days of finding out the result please - just so I know how entitled i am to push things if i feel as though they are taking too long. I am expecting my letter to arrive tomorrow i hope, which i hope will give me contact details and more information as I just feel a bit lost about who is doing what, and what I should be doing.
Thank you in advance xxx
Hi and welcome to the online community at what sounds like a very scary time for you.
I haven't had these tests so can't share any experiences with you but I noticed that your post hadn't had any replies. You could have a look through the previous threads to see if you can find the information you're looking for and also post your question in ask a nurse and one of the specialist nurses will respond within 2 working days.
I know how difficult it can be to listen to what you're being told when you have bad news so you might find this information from Macmillan on BRCA mutations helpful. It tells you about screening and tests as well as possible risk-reducing surgery.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
