BRCA1 so considering risk reducing surgery

I'm hoping to find information to help with my upcoming decisions about risk reducing surgery. I was diagnosed with triple negative breast cancer last year so have had a couple of surgeries (lumpectomy and then full axillary clearance), 4 months of chemo and a month of radiotherapy. I was then put forward for genetic testing which has revealed I carry a variant in the BRCA1 gene. I am now onto my next adventure of deciding if I want to have surgery to remove my ovaries and fallopian tubes and then possibly a bilateral mastectomy. Feeling a little overwhelmed, scared and emotional at the moment.

  • Hi, I’m currently going through chemo, then surgery (lumpectomy) and then radiotherapy. Currently half way through chemo and found out I have BRAC1 too…. Although behind you in dealing with the current tumour I’m also having to think about the what next and feel quite overwhelmed. Have decided that I will have my overlies removed as I’m now 51 and have two grown up children but so unsure about anything else. To be fair I could l, as advised, not make any decisions until later but it is making me anxious. Hence joining this group.

    sorry if this isn’t helpful but wanted to let you know you’re not alone.

    Much wishes. R 

    • It’s always helpful just to know you’re not alone and to talk about it so thank you for replying.
      I’m thinking ovaries should come out too, I’m 42 and the chemo has forced on early menopause so they have been made redundant anyway! Still feeling anxious about making these decisions, I think if I don’t go ahead with it then I’ll be forever worrying about what’s going on inside?! Like you say, not everything has to be done right now so maybe just start with ovaries and leave the mastectomy decisions for a later date?!
      I hope chemo is going well and you’re not feeling too ill with it?
    • Kx
  • I too carry the BRCA 1 variant and have had the triple negative cancer and now recovered. I decided to have my ovaries and fallopian tubes removed last year (am post menopausal and beyond child bearing years). The surgery was less invasive than I thought. I am now reflecting on risk reducing mastectomy but am not rushing in as I know it is a huge decision and not without risks and implications physically and psychologically. I'm taking my time and opting for annual mammograms for now. My surgeon did not advocate mastectomy but I know other surgeons do. Give yourself time.