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Recently diagnosed and now contemplating double mastectomy. Would really appreciate your thoughts..

Grace21Grace21 Member Posts: 2

I'm hoping to draw on your collective experience to inform my decision making over the next few days.  So, thank you in advance :smile:

I'm 46 years old.  I had a mastectomy (right) on August 12.  It was all very quick - as I only saw the breast surgeon for the first time day five days prior.  

He wanted to do the surgery as soon as possible - the tumour was lobular, 7cm (ER/PR positive, HER 2 Negative).  It was all off (no nipple/skin sparing).

I've now been told I need to return for more surgery in a week and half for Axillary clearance.  The final biopsy confirmed spread to my sentinel node (3 others nodes removed were clear) but the surgeon says the risk is too great, hence the need for more surgery.

So.. I now get to my question.  

I'm now considering asking for my left breast to be removed at the same time as the axillary clearance.  (The surgeon never proposed this but did confirm I would have an increased risk of cancer in my left breast).

What I am wondering is - when I get around to having a double reconstruction, will it make any difference when my left breast comes off?  Is it better to come off now, or should I wait and do it at the same time as the reconstructive surgery.

In the months ahead, I'm told I will need to undergo 4 months of chemotherapy, and 6 weeks of radiotherapy... so it may be 8 months or more, before I can go ahead with reconstruction.

Just for clarity.... I feel like I'm 95% decided in favour of getting my left breast off, as I have weighed up pros and cons.  My question is more of a timing question, than anything else.  Is it better to do it now, or later?

If you're up to sharing your experiences, I think I could really benefit from that.

Thank you,

Grace  <3


  • ZoffielZoffiel Regional VictoriaMember Posts: 3,308
    edited August 2020
    Hi @Grace21 I don't think I've ever spoken to a woman who has decided to have a double mastectomy, either on her own or with advice, who has genuinely regretted the decision to go ahead with it. Yes,  they mourn their breasts and there are some crappy stories about failed reconstruction (I'm one of those) but the consensus from those I ve been in contact with is that it is something they would do again in similar circumstances. The caveat here is that there will be others who do regret it. I just haven't spoken to them.
    On the other hand I know a number who have circled around the issue and have encountered huge problems later on.
    In addition,  I had immediate implant recons at 43, if I'd had my surgery before my chemo, I believe I would not have gone ahead with the cosmetic element. That was long ago and far away, but I think more time may have influenced my decision.
    Follow your head and listen to your heart. Mxx
  • GlemmisGlemmis Member Posts: 339
    Hi @Grace21, I had left mastectomy & axillary clearance in August 2016. At the time I wanted the other breast removed but my surgeon was reluctant as she worried it would take longer for recovery & I needed to start chemo so I followed her advice. As it was I ended up with an infection & seroma & had 2 rounds of antibiotics. I then had 6 months of chemo & 5 weeks radiation. In February 2019 I had the right breast removed & double reconstruction (Diep). Everything went very well & I had a smooth recovery. I feel so relieved I don’t have to worry about that breast anymore. I have just a follow up ultrasound on my reconstructed breasts once a year. I have no regrets & am very happy with the reconstruction. It is totally up to you regarding the timing. If you have the breast removed at the time of recon it will make the surgery a bit longer. Mine took 12 hours. If that breast is going to cause you worry until removal then it might be worth considering to have it done now and then you can concentrate on your treatment & recovery & plan your reconstruction later. Best wishes for your ongoing treatment!
  • Grace21Grace21 Member Posts: 2
    Thank you @Zoffiel @Glemmis and @iserbrown for your feedback.  I'm much appreciative :smile:
  • MazbethMazbeth BrisbaneMember Posts: 191
    Hi @Grace21 I was diagnosed with 5cm ILC  - Er/Pr + Her - (53y) in December 2019. I knew from the start I wanted a BMX as I have dense breasts and have had annual scans for many years - I personally could not keep doing it as I have had way too many anxious moments. My doctors were very supportive. I had neoadjuvant chemo (4x AC, 12 x taxol). I had the BMX on the 19th June with expanders put in immediately. I also decided that I did want reconstruction. DIEP was not an option for me so I will be having implants. So far everything has gone to plan and I am just simply relieved to have had the surgery. The pathology showed no node involvement and the margins were clear. However, the pathology also showed irregular cells in the ‘good’ breast - not cancer, but they would have required monitoring. These cells had not been picked up on any scans. I think I would have been back again if I hadn’t had the mastectomy. It was a good decision all round. I am now taking an AI for the next 10 years. Take care and I am wishing you all the very best. 
  • kmakmkmakm MelbourneMember Posts: 7,974
    I was the third woman to be diagnosed with BC in my immediate family, so it was on the cards from the very beginning as it was clear there was some kind of genetic risk factor (subsequently discovered to be a CHEK2 gene mutation).

    Having chemotherapy added further confirmation to my thinking. I did not want to spend the rest of my life on high alert for cancer in my other breast, which my BS said was north of 27%. There were a host of other factors, and I went ahead with the double mastectomy and DIEP reconstruction. I am pleased with the result but it has been a very long road.

    As @Zoffiel said, sad but no regrets at all.

    When it comes to reconstruction the best results occur when the mastectomy and recon are done in the same operation. However this can be complicated by radiation therapy. I would advise getting a referral to a reputable plastic surgeon who specialises in breast reconstruction and discuss it with them.

    Best of luck with your decision. K xox
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