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Double or Single masectomy (no reconstruction)

Christabell_123Christabell_123 Member Posts: 4
Hi ladies, (I'm new here) I have recently decided to get a masectomy (her2+ tumar with lymphnodes involved) coming to the end of chemo very soon. I am also now considering a double masectomy as I have read reacurance can be higher after the 5 years mark especially for younger woman (I'm 37 with lymphnodes involved and this kind of cancer) I don't want to go through all this again down the track. Does anyone have advice on reaccurance or double mastectomy? I also feel I may be a bit lop sided however that's not my main concern. Thanks so much! 

Comments

  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,405
    Christabell_123 you would get some great support from  a few groups on facebook
    1. reclaim your curves and  
    2. breast cancer and beyond
    I had Triple neg BC in 2012 decided on double mastectomy with no recon I love being flat. 
  • FernwehFernweh Caboolture, BrisbaneMember Posts: 56
    edited June 16
    Hi @Christabell_123

    Here my experience, I had a double mastectomy in February this year and just finished chemo this week. I only needed a single, but opted for a double (I had to push my surgeon as she wasn’t keen on removing both). Personally, there were many pro for me to remove both. If I think about it now, fear of occurrence  was ultimately only a small part of it. I say comfort (physical and mental) would be the reason. I decided to stay flat and loving it. I am also 37. 

    Reach out if you have any questions



     
  • Christabell_123Christabell_123 Member Posts: 4
    Oh @Fernweh thanks for your reply. Was it still done through the public system or did you have to go private? Was your surgeon not keen because of the double being a longer/riskier procedure? Do you think you feel more "even" having both removed? Thanks so much 
  • AllyJayAllyJay Member Posts: 870
    Hi there @Christabell_123. I was diagnosed in September 2016 with Stage 3, Grade 3, Triple positive (with node involvement), multifocal (more than 1 lump). I asked for both to come off and was given the usual talk of "It's very unlikely to recur in the other breast...any possible spread in the future would be far more likely in your liver, bones, lungs blah blah blah". I told my surgeon that I fully realised this, but made my point that I was far more concerned at that stage of a new, completely different breast cancer forming in the other one. At that time the stats were 1 in 8 women...now it's 1 in 7. I pointed out that I statistically still had a 1 in 8 chance, and that whatever contributed to the present cancer forming in my left breast, still applied. My gender, age, alcohol consumption (minimal), genetics etc etc..also applied to my right breast. You can toss a coin twenty times and it by chance comes up heads each time, the twenty first time you toss that coin...the odds are still 50/50. I didn't like my chances of 1 in 8 for the other side in the future and a repeat of the shitfest. I got what I asked for...public patient at large public hospital in Sydney. The squeaky wheel gets the oil....if your feel safer with both, then push. Don't just sit like a good little patient with your hands neatly folded in your lap. That's one thing I've learned over the past almost 6 years...be your own advocate. Good luck with your treatment.
  • Ausmum2Ausmum2 QueenslandMember Posts: 50
    Hi @Christabell_123
    I’m a double mastectomy flatty post TNBC from 2021. 
    I elected a double after I had a chat with someone who had just done a single reconstruct as she had back and neck trouble from being single breast for 17 years post cancer treatment. 
    I’m very very happy flat (I was a double D girl) and my neck and back thanked me within weeks of the double mastectomy. 
    I’m also somewhat relieved to never need another mammogram again (ultrasound only for us flats) and I save my previous bra money for fun time with friends (aka trips away) as a reward. 
    Bra free life (and choosing boobs and their size - “I say when, I say how, I say how much”) rocks for me.
    I did have to confirm twice with my surgeon that “my boobs, my risk, my decision” but he accepted when I said “one surgery, once and then two even sides with identical risk forever more”


  • Christabell_123Christabell_123 Member Posts: 4
    Hey @Ausmum2 thanks so much for sharing. Sounds like your happy with your choice which is great! 
  • Christabell_123Christabell_123 Member Posts: 4
    Thanks so much for sharing @AllyJay appreciate it. 
  • FernwehFernweh Caboolture, BrisbaneMember Posts: 56
    @Christabell_123
    I went with a private surgeon because I didn’t want to go through the public system here. My surgeon didn’t talk much... She just said ‘ we need a mastectomy’, so had to do much thinking on my own. When I mentioned I wanted to consider removing both breasts, she simply  said she didn’t recommend it in case of complications, as that would have delayed the start of chemo for me. I said  that unless there was a real medical reason I wanted both gone at the same time as I didn’t want any more unnecessary surgeries.

    I am really happy with my decision to remove both (and not do reconstruction). I feel comfortable and light. I cannot imagine myself with just one breast or both my breasts again for that matter. 

    Plus whatever has been said in the comments above. I didn’t want to take my chances and my back doesn’t hurt anymore! 

    You got this! 
  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi @Christabell_123
    I “ went the double” after a lot of consideration.
    I had lobular cancer which is slightly more likely to appear in the other breast ( my breast cancer surgeon gave me stats of 10 percent).
    He said to me “ are you the sort of person who pays an extra insurance premium to have no excess when you rent a car?”
    The answer was yes! I am very risk averse.
    He was totally supportive of my eventual decision which was mainly done to avoid the anxiety of have to go through the whole shitfest again.
    I discussed it with my GP,breast care nurse and some others who had also had double mastectomy.
    I also looked at discussions on here.
    It is an intensely personal decision and the contrary view - why remove a perfectly healthy breast ? Is perfectly legitimate.
    All the best with whatever you decide.
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 796
    @Christabell_123 I had a single mastectomy in may 2020. 

     I am in the public system and asked about removing 2nd breast as I was a large 22dd bra size.  The surgeon said we don't remove healthy breasts and that was the end of the conversation.    I didn't think I had a choice.   

     I was left with a lumpy bumpy site and a flap of skin under my arm called a dog ear flap.  I hated looking at this every day. 

      Now 2 years on I've just had the dog ear flap tweaked with surgery and I have a better finish than I originally had.  I am happy with this.  Sometimes I do think about removing the other breast as it can get heavy.  The prothesis I have looks very natural so if you didn't know you wouldn't know.   The prothesis does get hot in summer as my body temperature goes up and up.
  • Christabel03Christabel03 Member Posts: 22
    Hi @Christabell_123

    I had a single mastectomy in April this year after being diagnosed in October 2021 and having six months of chemo first. I really wanted both off but the same as what others seem to have said above, my surgeon wouldn't do both at once as the priority was to be given to the breast that needed to be removed and for the radiotherapy and chemo to continue without any hold ups or complications. I have had no reconstruction but have already made my mind up to have my other breast removed hopefully next year when all treatment is over and again won't be having any reconstruction. I wish I had pushed a bit more for what I wanted but at the moment I just want this over as quickly as I can so am just doing what I need to do.

    I do have moments where I sit in the space of worrying about the future and the what if's but for me personally the decision moving forward is because I know I would be happier being completely flat rather than being as I am now with one breast and this kind of outweighs the thoughts of the recurrence at the moment.  Each to their own, this journey is so personal and so different for everyone. I think as you go along and speak with others treading the similar path you kind of just figure out what you want for you :)

    Good luck with your decision xx
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