Forum Discussion

SamzRusty's avatar
SamzRusty
Member
12 years ago

BRCA 1 Positive

Hi Ladies,

When your oncologist calls at 8:35pm, you know it's not to see how dinner was...

So it turns out I'm BRCA 1 positive. That now means I don't have to have radiation in January. I will be going in for the double mastctomy with reconstruction & keyhole hysterectomy in the new year. Turned out to be a bit of a no brainer for me once we sat down with the oncologist this morning & talked it through. 

Has anyone else gone through the reconstruction process? What can you tell me before I see my seurgon in 2 weeks? What should I be asking him?

Thanks in advance, Sam xoxox

*100% OK with this result, gives me more answers than questions :)

BRCA1-BRCA2
mastectomy
radiotherapy
Reconstruction
  • leanne_29's avatar
    leanne_29
    Member
    12 years ago

    Hi Sam - when I discovered I had the BRCA1 gene in Oct 2010, I had a hysterectomy in Feb 2011 and then found out Breast cancer in Nov 2012.  I had bi lateral masectomy with reconstruction with tissue expanders. Hoping to have implants in by Xmas. I didn't use my own skin because my surgeon thought having Fibromyalgia would cause more pain and take longer to heal.  Good luck and best wishes   Leanne  Xxx

  • Peta76's avatar
    Peta76
    Member
    12 years ago

    Hi Sam,

    Yes I will be having reconstructon but I haven't spoken to my surgeon about it yet. I will see him in December and I will see my oncologist in October. I have an appointment next week about my ovaries.

    Yes fingers crossed our children do not have to go through this. 

    Peta

  • Peta76's avatar
    Peta76
    Member
    12 years ago

    Hi Sam,

    Yes I will be having reconstructon but I haven't spoken to my surgeon about it yet. I will see him in December and I will see my oncologist in October. I have an appointment next week about my ovaries.

    Yes fingers crossed our children do not have to go through this. 

    Peta

  • SamzRusty's avatar
    SamzRusty
    Member
    12 years ago

    Hi Peta,

    Are you doing the reconstruction? I'll be off to see my surgeon in the next couple of weeks to see what type of surgery options I have for the reconstruction. My mum & cousins are about to be tested too. Here's hoping that by the time this becomes something our kids need to think about there will be a cure. 

    Love Sam xoxox

  • Peta76's avatar
    Peta76
    Member
    12 years ago

    I too have recently found out I am BRCA1 positive. I have finished chemo and radiation and thought I could just get on with life until I heard the news. So now it's more surgery -ovaries and fallopian tubes and I have decided on a bilateral mastectomy. I guess the hardest part to finding out your BRCA1 positive is knowing that my children have a 50/50 chance of having it too! That part really sucks. My parents and siblings are now getting tested too. 

    Peta

  • Peta76's avatar
    Peta76
    Member
    12 years ago

    I too have recently found out I am BRCA1 positive. I have finished chemo and radiation and thought I could just get on with life until I heard the news. So now it's more surgery -ovaries and fallopian tubes and I have decided on a bilateral mastectomy. I guess the hardest part to finding out your BRCA1 positive is knowing that my children have a 50/50 chance of having it too! That part really sucks. My parents and siblings are now getting tested too. 

    Peta

  • Michelle_R's avatar
    Michelle_R
    Member
    12 years ago

    No - it wasn't painful - just a dull ache that faded almost overnight.  I was operated on in the evening and stayed that night and also the next - I wanted to go home the following day but they said a second night in hospital was better.

    Because there is so little pain, you have to remember not to overdo things when you get home.  A couple of small dressings were all I had to show for it. The miracles of modern medecine!

    Love, Michelle x

     

  • SamzRusty's avatar
    SamzRusty
    Member
    12 years ago

    Thanks Michelle.

    I'll try looking up Louise's group.

    How long were you in hospital for withthe keyhole hysterectomy? Was it very painful? I'm pretty sure the reconstruction is going to be unpleasent, but I smiled when I found out there was no need for future MRI's, just a yearly feel up :)