EMPD Extramammary Vulvar Paget’s Disease

cfisher8192
cfisher8192 Member Posts: 1
in Gynecological Cancers (other than ovarian and uterine) #1

Is there anyone out there with EMPD??

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  • RoseinMaine
    RoseinMaine Member Posts: 1
    #2
    just found out it's back

    I was diagnosed a couple of years ago with Paget's Disease of the vulva. I had surgery, and at the one year checkup, there was no evidence of disease. But I just found out it's reoccurred. Feeling a little scared! 

  • KatherineT45
    KatherineT45 Member Posts: 1
    edited October 2019 #3
    EMPD

    Hi, I just finished treatment for EMPD colorecta. 

    I would love to talk to someone who has gone through this. 
    How long does it take for the digestion to calm down. Suffering with incontenence as well.

     

  • JeanneMermaid
    JeanneMermaid Member Posts: 2
    #4
    extramammary Pagget's Disease

    I was diagnosed with Extramammary Paget's disease in June of this year (2021) and had a partial vulvectomy in July. I was looking for other folks to discuss whether you had reconstructive surgery to rebuild a "normal" vulva - or anything else that you can share about your journey. I am being co-followed by my oncoloist and a dermatology specialist. The dermatologist is waiting for full healing to decide about topical treatments later this year.  Thanks in advance

  • JeanneMermaid
    JeanneMermaid Member Posts: 2
    #5
    Yes I have EMPD also

    I was so happy to find this group. I was diagnosed this year with EMPD and am looking to share and find out what others have gone through.

  • NikkiB84
    NikkiB84 Member Posts: 1 *
    #6

    I know this is an old thread but is anyone active on this? I would love to talk to someone that has this also.

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