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Preventative mastectomy?

Hello everyone,

On New Year’s Eve, I was diagnosed with Stage 3 breast cancer. I have a fast-growing, triple-negative tumour in my left breast that had spread to my lymph nodes. It requires six months of chemotherapy, a mastectomy and removal of my lymph nodes on the left, and radiation therapy.

I have very small, very dense breasts. Although there is no evidence of any cancer in my right breast, my instincts are to talk to my surgeon about doing a prophylactic mastectomy on the right breast. Treatment has been really tough so far, and I really don't want to be doing it all again in 5-10 years' time. But I am trying to figure out if it is 'treatment trauma' talking, or good instincts! I don't want to live in a shadow of fear. My first priority is my long term health, over aesthetics.

I welcome any thoughts on the subject.

 :smile:  


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Comments

  • FLCloverFLClover Sydney Member Posts: 952
    What a terrible time to be diagnosed 🙁, not that it’s ever really a good time. I’m not sure what to say in terms of having the right one off too. A lot of women believe it doesn’t make any difference. Then again, lots of women get it in the other breast a few years later. I had lumps in both breasts simultaneously, so I didn’t think too much about having a double mastectomy. I did have expanders put in at my surgeon’s suggestion, which I’m yet to have exchanged for implants. If you’re the kind to worry a lot, maybe it’s better to have both off, just for piece of mind. 
  • PV123PV123 Member Posts: 200
    Hi @jtee
    I had a small tumour in one breast and initially had a lumpectomy.  I also had dense breasts and was often called in for further mammogram or ultrasound.  I decided to have prophylactic double mastectomies last year..  I did not have any expanders or implants, I just wear prosthetics when going out.  I am very happy with my decision.  Good luck with your decision.  
  • lrb_03lrb_03 Member Posts: 1,239
    A decision only you can make, but if it feels right to you tggen it's the right decision. Don't second guess that
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 62
    I’m with irb on this . I’ve only had lumpectomy/rad/chemo and it’s looking fine although early days as only 9 months on, but If there’s any hint of any recurrences I’ll,be opting for,double,mastectomy so,all  breast tissue removed 
  • Julez1958Julez1958 SydneyMember Posts: 44
    Hi jtee
    i had a left skin sparing mastectomy in October with insertion of a tissue expander in anticipation of DIEP flap reconstruction and was going to keep the other breast but after further consideration I am going to have that one removed too ( apart from the skin ) and having a double DIEP flap surgery at the one time in a couple of months.
    It is a very personal decision and whatever you decide is valid. My main reason was I didn’t want to go through it all again if cancer appeared in the other breast.Also if you have DIEP flap reconstruction they can only use the tummy fat once.
    If you join the breast reconstruction group on here there are lots of stories and photos I found helpful .
    There is also a website “ Reclaiming your Curves” which I found helpful. But of course going flat ( single or double) is also a perfectly fine decision too.

  • MazbethMazbeth BrisbaneMember Posts: 124
    Hi @jtee I was diagnosed with ILC in my left breast and decided immediately that I wanted a double mastectomy. I had very large, dense breasts and I had years of mammograms, ultrasounds and biopsies and I knew that  I just could not handle the anxiety of that in the future. I had chemo first and then had the surgery where expanders were placed immediately under the muscle. I had the surgery in June 2020 and the implants placed in the December of that year. I am very happy with all of my decisions and the outcome of my reconstruction. When I got the pathology after the surgery, I had clear margins, but interestingly, there were ‘abnormal’ cells in my right breast - not cancer, but the surgeon said they would have needed monitoring at some stage. This confirmed to me that I had made the right decision. I would totally recommend having a really good discussion with your medical team about your options. I also tried to imagine how I was going to feel at each mammogram in the future. Take care. Treatment is so challenging in so many ways, but you are getting through it. M x
  • MicheleRMicheleR South AustraliaMember Posts: 226
    edited April 14
    Hi @jtee,

    I had a large ilc tumour on right side. I had a smx. I think trust is low in your own body when cancer happens. Do what makes you feel comfortable. For me my husband asked about having the left removed which was a bit like having an out of body experience since it was my breast! I was shown my breast mri and the difference could not have been more obvious. Im not a medical person but i decided to take things one step at a time. There is so much to process as it is and it seems so rushed. 

    Im due for a mammogram of left side july. We shall see. I dont want to go through all the surgery, chemo and radio again but i could/would if needed.  I think the chances are small given chemo but you never know. I choose to move forward and take the hormone blockers and trust that things can be alright again. Not the same but alright. 

    All the best with your upcoming surgery. I believe that your body tries to tell you so probably your instincts are good. 

    Michel


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