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Has anyone had Paget's disease of the vulva?

Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)

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@ameliae

@biancasmythe Thank you for your honesty. And I'm thankful to hear if I'm interpreting correctly, anger and frustration that no one really understands EMPD vulva and no Moh surgeon has experience with surgery on the vulva. I asked the dermatologist who might have done the massive surgery taking skin from my thighs - what if he nicked my bladder or urethra. He said, though he as really nice, I could have a bag for urine. (probably not his terminology). I'm 77 1/2. I am angry and frustrated, and afraid that taking the route of no surgery, at least for now, is going to leave me without support medically. It's all so unknown. No surgery, I've done 10+ years unknowingly. The itch and burn is sometimes horrible, but not unbearable. Will it turn to cancer? Will it go from non-invasive to invasive? But with surgery, how long before it returned and the rest of my life going from surgery to surgery and not living in some ways. It's one day at a time and living as fully as I can.

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Replies to "@biancasmythe Thank you for your honesty. And I'm thankful to hear if I'm interpreting correctly, anger..."

I am reading your post and also post from of Nomikins. It is my feeling as well that the treatments for EMPD have not been proven, and that alone is scary. As I mentioned in my profile, when I have a recurrence of Paget of the vulva, I am treated with Imiquimod. Initially almost 3 years ago, I was scheduled to have my clitoris cut off (I was 65 at the time) but I was asked if I wanted to try Imiquimod instead because it seemed then to have worked on others. So I said yes. The bothersome side effects are now being managed and don't suffer as much. However, for two months, I have low energy and take naps often. My oncologist keeps telling me that EMPD of the vulva is slow at developing and as long as I get visuals of the area, I am staying on the top of the evolution which, untreated, can develop into cancer. So basically I don't know what is going to happen to me in the long run. Best regards to you