Forum Discussion

Dianna's avatar
Dianna
Member
12 years ago

BRCA1

Due to strong family history I relented and had the genetic testing done. Results confirm I have the BRCA1 mutation. I have met with a breast surgeon and had some options given to me. My decision has been to be proactive rather than reactive. Having 2 young daughters has helped this decision - sacrifice a few weeks during school holidays (I'm a teacher) or possibly be sick for 12 months. So far I have met with the breast surgeon who gave me my options - close monitoring, tamoxifen, mastectomy and reconstruction. I didn't realise that I needed yet another surgeon to reconstruct. So plastic surgeon visit soon along with gynecologist to help in decision making. I'm keen to hear from others who have been down this path. What types of reconstruction did you choose; how long was recovery; is there a support group? So many decisions and would love to chat with others who understand what it's like mentally and physically. Thanks Dianna
BRCA1-BRCA2
mastectomy
Reconstruction
tamoxifen
  • Dianna's avatar
    Dianna
    Member
    11 years ago
    Sorry I missed this message. I had no problems at all. Not even need for panadol :) My surgeon was Namrata Bajra at both North West and Wesley. Highly recommend her. I started off with a Mirena for progesterone with a patch for oestrogen but somehow my Mirena fell out during school camp - we are thinking that maybe I wasn't quite ready to tackle some things, but again I felt fine. I'd had a Mirena for 12 years previously. I am now on tablets for around 10 years. The reasoning from Namrata is it helps with preventing bone and heart problems and dementia. In the switch over between meds I got to experience hot flushes and they weren't nice, but that was only a few times and I'm back to normal.
  • Gemma's avatar
    Gemma
    Member
    11 years ago

    Hi Diana glad to hear it's going well for you. Was it a quick procedure? I'm struggling at the moment with surgeons and time. Also I've met a great surgeon but the reception manager is a biatch! rude unhelpful and is not worried about gossiping whilst patients can hear. I'm a bit frustrated as I've met 2 surgeons who have conflicting information and I can't get another consultation for about 6 months with another surgeon. Grrr frustrating.

    Are you taking HRT? How are you feeling n yourself! Happy? Worried?  relieved? It's a bit of a roller coaster we are all on. 

     

    Very happy to hear your progress.

     

    Gemma

  • Gemma's avatar
    Gemma
    Member
    11 years ago

    Haha yes I've been telling my hubby it's just a boob job!!! My  genetics team said to leave the ovaries in as long as possible, as long as they are out by 40 seeing as mum was 45 when she was first diagnosed.

    good luck with everything, would love to hear about it all. 

     

    Gemma

  • Dianna's avatar
    Dianna
    Member
    11 years ago
    I'm all booked in. I've decided to be proactive. Ovaries go on 25 June. breast surgery 8 December. Because I'm a teacher I'm taking advantage of the school holidays. I have chosen the implants - I should be half 'inflated' before returning to school. This surgery suited my situation because he is not trying to match an existing breast. I'll start fresh with safer younger boobs :) (what I'm telling myself at this stage rather than dwell on it).
  • Gemma's avatar
    Gemma
    Member
    11 years ago
    Hi Diana I too have the mutation and am now on the path to mastectomy and ovaries removed. I've only met with specialists as yet no surgeon. I don't even know where to start. How have you been going? My mum died of overian cancer my aunt has breast cancer I'm tell only one who has had the testing, my sister is not interested. My nan died of ovarian cancer and another aunt had breast cancer. Hope all is going well Gemma
  • Dianna's avatar
    Dianna
    Member
    12 years ago
    Thanks, I will have a look. My ovaries and tubes come out in June. So it's just step by step now. After chats with mum the decisions are easier. She has brca1, lump removed at 26, bc at 38, got through that and 13 years later copped the other side. Chemo has really put her body through a lot. Like she said, if she had taken the mastectomy route she wouldn't have had to go through it again. But then the 2nd dose had her getting the ovaries removed. So that could have saved her. My grandmother had the double mastectomy but died of ovarian cancer at 42, so tough to say.
  • Carol_Anne's avatar
    Carol_Anne
    Member
    12 years ago
    Hi Dianna, For information on BRCA1 go to website pinkhope.org.au/ lots of inspiration and support. Carol x