Double or single mastectomy

Bon BonBon Bon Sunshine Coast Member Posts: 28
Hi All
I am about to turn 50, happy birthday me! I have just been diagnosed with breast cancer. They say a lumpectomy with radiation  will do, but that is what they said to my sister and it came back big time. So to me it's a no brainer, get the whole breast off, however I am thinking why would I keep the other one??? To run a risk of getting cancer in that boob???  And wouldn't they look uneven? I know it's going to be a huge op but wouldn't it be safer??? I have just become a grandma for the first time.  I see my surgeon on Monday, in 5 days.  What are your real life experiences. Also I would want to have a reconstruction as I am single ...and vain


  • CosetteCosette Member Posts: 652
    Hi @Bon Bon, welcome to the online network. Be sure to post your birth date in the birthday thread so we can all celebrate with you.

    We have a number of members with experience in the area of reconstruction like @mum2jj and @Chorsell. We also have a private group dedicated to this topic, which includes a lot of photos from our members. Click here to request to join choosing breast reconstruction. You might also want to check out BRECONDA, which is a decision making tool.
  • GlemmisGlemmis Member Posts: 221
    Hi Bon Bon, sorry to hear of your diagnosis but seems like you have a plan. I initially had lumpectomy & was told radiotherapy only but then had to have mastectomy & chemo & will be starting radio next month. I wanted a bilateral mastectomy at the time but surgeon was reluctant so I will be having the good breast off in July & reconstruction of both. I was told it slight reduces your risk but it is really for my own reassurance. Good luck with your decision, it is a tough one!
  • ChorsellChorsell South AustraliaMember Posts: 433
    Hi there Bon Bon

    i was 51 when diagnosed, strong family history. My recommended treatment was single mastectomy but elected for a double with immediate reconstruction - you are not vain to want reconstruction....
    your options and choices are very individual and I think you are wise to explore all options. Ask lots of questions and work out what is best for you. If you are considering reconstruction the closed group @Cosette_BCNA recommended is a good option to get specific real experiences from other ladies.

    Remember that it is your body and your choice and reconstruction is part of your treatment in the process if that is what you choose.

    feel free to ask lots of questions


  • primekprimek Broken HillMember Posts: 4,184
    I was 51 at diagnosis and chose a double following an Aunt getting a second primary in other breast (brac1 mutation) and mine was difficult to detect.  I chose immediate tissue exoander reconstruction and happy with outcome. Whilst I don't carry the gene I am happy with my choice.
  • rowdyrowdy Member Posts: 1,165
    Welcome I was 52 when I was diagnosed in the beginning I was told lumpectomy,radiation and then hormone treatment.
    I ended up with 2 surgeries to get clear margins, which the doc couldn't get so ended up with a left mastectomy. I had immediate reconstruction and then a lift to even up. It will be 3 years this month and I'm happy with the result. I did discuss having both off doc said as no family history no need. I'm due for my mammogram this month and yes I stress, I don't think that will ever change. Having reconstruction is not being vain it is what you need to feel good abut yourself.
    Good luck with your choice do what is right for you xx
  • mum2jjmum2jj Member Posts: 3,423
    Hiya Bon Bon. I initially had a lumpectomy chemo and radiation. My lump was 3cm and aggressive, also 8 mths after a clear mammogram. Unfortunately 6 months after all treatment completed I had a recurrence. Also aggressive and 3cm and also not detected on a mammogram 6 mths earlier. Of course I had a mastectomy, I wanted both off and a reconstruction, however at the time it was decided chemo was more important. My Dr told me if I still wanted the other breast off then to do it at time of reconstruction. So I had a couple of years of weighing up pros and cons. I did eventually decide to have the other breast off. The main reason was that my cancers were not detected easily with mammograms. I have no regrets, however I do really miss the sensation of my breasts ( the fake ones are numb).   
    You can only weigh up your pros and cons and make your decsion based on this. You are definitely not vain wanting to reconstruct. It is a personal decision and whatever you choose is right for you. 
    Joining the choosing breast recon group will as @Cosette_BCNA mentioned give you access to some photos etc and other women who have had reconstructions. 
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,754
    I had a double at 43. I knew I would never be able to trust the second tit. Had tissue expanders reconstruction done at the same time --which if I'd known then what I know now I would not have done. But that's a different story and more about the way I scar than anything else.

    If you are big breasted and go for a single, the current advice seems to be that you should plan to wear a prosthetic or consider reconstruction, not for cosmetic reasons but to try to avoid back and shoulder pain associated with being unbalanced physically. Talk to the breast care folk.

    Personally I didn't find the decision to get rid of both any more challenging than the realisation that one had to go. Back in those days the surgeons up here wouldn't do it ( still reluctant from what I heard yesterday) so I ended up in Melbourne at Peter Mac. That certainly influenced the reconstruction process which I may not have bothered with if I could have had a double performed locally.

    I've had a recurrence after ten years anyway, but at the time I felt I had done everything I could to increase my chances of survival.
  • LispyLispy Member Posts: 21
    Just wondering, are we allowed to decide if we want them both off? I've been told I can request it but it may not be approved and I'd have to do it privately. I had one removed and was hoping to have the other one done when I have the expander removed. My oncologist recommended it.
  • melclaritymelclarity Member Posts: 3,059
    Hey Bon Bon!! Well its a very individual thing I suppose. Everyone is different and no 2 people the same. I had lumpectomy, rads and tamoxifen 2011, recurrence in 2015, another major lumpectomy and nodes out all clear, chemo and now on Arimidex. Im big breasted so my Surgeon of 6yrs said lumpectomy was all that was necessary. Im having a single mastectomy in 2 weeks with Diep Flap recon as I had rads so cannot have implants. Genetic Counsellors found I was negative and like Rowdy, said a double was unnecessary and odds of getting it in my other side were no different to how random it is. So big breasted and opted for one...well to be honest don't want it at all!!! but not doing this again so this will be prevention and the end for me!!! I dont regret the lumpectomies at all it was right for me. Melinda xo
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,754
    Hi @lispey.
    If you are seriously considering a bilateral mastectomy, could I suggest you take advantage of the bulk billed counseling services  that you can access via your GP (who can do a mental health plan without any fuss) Breast care nurses can then help you find someone who will suit you.
    The rationale behind this is that you get to talk through the issue then, if you are sure it's right for you, when you find a surgeon you can demonstrate that you are aware of the implications of what you are asking. Going public should also not be an issue unless you are in a small centre where ideas about this procedure can be a bit backward. I had to interview 4 surgeons defore I found one who would do what I wanted and when but that was a while ago and attitudes are changing.
    I don't know where you live but if you are in Victoria I'd ask for a referral to Peter Mac, you will find someone sympathetic there.
    Health care can be like any other service, sometimes you have to do a bit of shopping. Marg
  • LispyLispy Member Posts: 21
    @zoffiel (Marg) thank you for your response, I will look into it. I'm in Brisbane and was surprised my oncologist supported it but then told me the surgeon may decline!! 
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