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PTEN Gene mutation recommended mastectomy

I was recently diagnosed with PHTS after a gene test. This along with heredity and atypical ductal hyperplasia my doctor has recommended a double mastectomy. I'm 50, and I've decided that I'm going flat. I'm concerned that I'll have regret from a (will I still feel like me perspective) but I think it's the more logical decision for me. I would appreciate any suggestions, any thoughts, etc. I've struggled with this but realize I'm lucky to know prior to going through cancer, which is much more difficult. Thank you all and I look forward to chatting with you all.

Comments

  • maggie15
    maggie15 Posts: 1,825
    edited January 19

    Hi @mooreyvette37 , It's a tough decision to make but you are being proactive about your health. Make sure to ask for an aesthetic flat closure for a better cosmetic outcome. There is a national list of surgeons who are experienced in this. I had a different procedure but my surgeon is on the list.

    https://notputtingonashirt.org/directory/

    Hopefully someone who has done this will post about their experience. All the best.

  • myyoga
    myyoga Posts: 33

    I just have to put in my two cents. I had a prophylactic BMX two months ago, no reconstruction. I’m happy with my decision as I’m already 63. I wish I had known about my mutation before dx with breast cancer, early stage, lucky me. I went through lumpectomy and sentinel lymph node biopsy, radiation, then AI. Finally I mustered my courage to go for BMX. It’s a relief to be on the other side knowing that I’ve done all I could. But once you are dx with cancer, you’ll never know for certain you are all clear.


    I asked my surgeon for aesthetic flat closure and she said “Huh? I always make it as flat as I can.” After the surgery I consulted with another surgeon regarding the thick hematoma on one side. She examined me and commented that the other surgeon did a good job, flat and not lumpy at all.

    Also ask for paravertebral block (nerve blocking). I didn’t get that but others who had gone through the surgery recommended. Both my surgeon and the anesthesiologist didn’t know how to do it. So I ended up with pain med.

    You still have time but make sure you have MRI as part of your surveillance.

    Best.