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Has anyone had Paget's disease of the vulva?

Gynecologic Cancers | Last Active: Apr 13 6:46am | Replies (231)

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Profile picture for ameliae @ameliae

@bouf1948 It would be good if they could check if it is invasive or not. Mine, it turns out, is among the 12% non-invasive. I use prescribed (in Canada) cream. I also refused massive surgery (fortunately) because I was diagnosed with metastatic breast cancer not long after 8 + years with what was finally biopsied and diagnosed as Paget's. Curious - the anti-estrogen meds have decreased Paget's symptoms as mine is estrogen-mediated and the surgery would have been, for me, a huge mistake. I'm wondering if docs test for the estrogen link.... before some surgeries. Praying for you.

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Replies to "@bouf1948 It would be good if they could check if it is invasive or not. Mine,..."

@ameliae I go to the doctor Tuesday - he only sees patients Tuesdays. He has experience with Paget’s - he was listed as distinguished on Mayo Clinic’s list of doctors. I’m praying I can use the cream only. I’ve been using all kinds of creams, like steroid creams, diaper rash creams, Vaseline, but none of them worked. If I do nothing, it’s better. I’m glad the cream worked for you!