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??

Comments

  • 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: 4 Member
    #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.

  • canix
    canix Member Posts: 5 *
    #7

    I was just diagnosed with EMPD in December 2024. I had surgery this week. Any one else current?

  • NikkiB84
    NikkiB84 Member Posts: 4 Member
    #8
    https://csn.cancer.org/discussion/comment/1720324#Comment_1720324

    I had surgery in October and just had another follow up. So far I’m still in the clear. How are you feeling?

  • canix
    canix Member Posts: 5 *
    #9

    I am sore. Especially at the end of the day. I am trying not to sit up more than 2 hours at a time.

    I had a wide excision of the vulva. The margins were positive so I am wondering if I should consider a MOHS surgery.

  • NikkiB84
    NikkiB84 Member Posts: 4 Member
    edited January 17 #10
    https://csn.cancer.org/discussion/comment/1720342#Comment_1720342

    Have you tried Aldara cream as an alternative to surgery?

  • canix
    canix Member Posts: 5 *
    #11

    No. I don’t know about that. I will need to research it.

  • canix
    canix Member Posts: 5 *
    #12

    What state are you in?

  • NikkiB84
    NikkiB84 Member Posts: 4 Member
    #13

    I’m in Oklahoma. Aldera isn’t a chemo cream but it did wonders for me when I was first diagnosed. It has better outcomes than the chemo cream Fluorouracil. Since your margins weren’t clear with surgery once you heal you could always ask your doctor if they feel that’s something that you could benefit from instead of another surgery, at least at first. Aldara cream got rid of most of mine but I kept having a reoccurrence. I just started nursing school and did not want to have 12 to 16 weeks worth of treatment.m so I opted for surgery since it was a small place away from the important areas.

  • canix
    canix Member Posts: 5 *
    #14

    Thank you.

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