Double mastectomy

Njago10
Njago10 Member Posts: 2
Hello I'm new here, I'm looking for information and peoples experiences with prophylactic double mastectomy.  I have recently had a lumpectomy which they found atypical ductal hyperplasia cells, I'm 33.  My mother, her sister and my cousin were all diagnosed in their 30's and died in their 40's.  My surgeon has advised me to do my research on double mastectomy, wondering what peoples experiences were and the in's and out's of all the options, I see him again in 2 weeks and would like to ask appropriate questions.  Thanks.

Comments

  • primek
    primek Member Posts: 5,392
    edited September 2017
    I chose bilateral skin sparing mastectomy with reconstruction. I didn't keep nipples due to tumour location. I chose the option at my surgeon's suggestion given my family history and also because a MRI 5 weeks before I discovered a lump didn't show a cancer due to breast density. I decided the stress of wondering if recurrence or new primary was growing and not visible would be too great. I do miss my breasts but I am happy I have made the right decision. There are a number of reconstruction options and we have a group called Choosing Breast Reconstruction. In it are photo stories of various procedures by members here. Goodluck with your decision. 

    http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
  • lgray3911
    lgray3911 Member Posts: 207
    I was diagnosed this year aged 37. I had tiny boobs so mastectomy was recommended for the breast with cancer and I chose to have bilateral mastectomy. For me it was after the shock of being diagnosed I wanted to deal with treatment in stages and surgery was stage one so do it all in one hit as I didn't want to do again after my treatment finished. I couldn't face it twice and also I didn't want to spend my time when all this is done worrying about getting cancer in the other breast. Hope this helps x
  • Cynth6
    Cynth6 Member Posts: 189
    I opted for bilateral mastectomy with implants. For me it was a quick decision as my mother has passed away from breast cancer and I have the brca1 gene. 

    Im now post 3 days from my mastectomy and I definitely don't regret it. If there's a slight decreased chance of reoccurance then I would take it. 
  • Zoffiel
    Zoffiel Member Posts: 3,374
    Both off for me too. I had an agressive lobular carcinoma in one that took a hell of a long time to identify because of breast density and I didn't want to spend any more energy worrying about whether the ' good' breast was ok. As it turns out, the second one was also corrupt.
    I dont miss the boobs but wish I hadn't gone down the reconstructive route. It's too late to change that now.


  • iserbrown
    iserbrown Member Posts: 5,716
    @SoldierCrab - woo hoo!  Shout it out loud, NED - no more Oncologist visits, excellent! 
  • onemargie
    onemargie Member Posts: 1,264
    Hi there I was diagnosed with triple negative stage 2a grade 3 (3cm tumor)  bc may last year. Had the left boob off with the cancer in it and then 6 months later took the right one off for prophylaxis. I'm 45 now  have no family history and am negative for the BRCA gene don't regret it at all and am glad to reduce the risks by doing it. My surgeon said it wasn't necessary to take the other one off and in fact I could of left the left one on too and just took the lump but then I would of had chemo and rads so took it off so only had to have chemo. Have you had the gene test ??? You should qualify with your family history and because your under 50. Either way it's your decision to make and a big one at that but mentally I reckon it would be easier to do the double and reconstruction now without the stress of worrying about bloody cancer as well. Listen to your gut that's what I did and like i said don't regret it. You'll know what's right for you either way. Margie ❤️
  • Njago10
    Njago10 Member Posts: 2
    Thanks for your stories everyone.  At this stage double mastectomy seems extreme given that I don't have a diagnosis of cancer but a strong family history and atypical ductal hyperplasia.  Was anyone else in this position?  
  • Afraser
    Afraser Member Posts: 4,435
    Terrific @SoldierCrab, just what we all want to hear! Happy news! 
  • SoldierCrab
    SoldierCrab Member Posts: 3,429
    edited September 2017
    @Njago10
    I would like to suggest making a post called atypical ductal hyperplasia. as not everyone reads every post and they might not read one with double mastectomy on subject .... Just a thought.  Do you know how to do a search in discussions also to bring up any discussions on atypical ductal hyperplasia?