← Return to Rare Cancer: Gynecologic Extramammary Paget's Disease

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@catlazz

Hi all. New to this page and just diagnosed with EMPD after a year of missed diagnoses. Saw oncologist last week and having surgery next week. Procedure will be wide excision; cancer is now down both right and left labia. Doc will also scope bladder and anus while I’m under anesthesia. Have been rushing to get several tests done to check for spread: pelvic ultrasound, sigmoidoscopy, chest X-rays, cardiology consult (am open heart patient 2x), lots of blood work, and ekg. I’m 65 so while I’m dreading disfigurement, I’m long married and not in the dating pool ~ I’m so sorry for those who are. My big concern is pain afterwards as doc said it’s not unusual to pop a couple stitches because of where they’ll be. Oncologist said 40% of EMPD patients have cancer somewhere else, but hey that means 60% don’t:) She also says it’ll be managed from here on with surgery (unless other organs are involved then chemo, etc.) because since it has such a high rate of recurrence they’ve found chemo and/or radiation at this point probably wouldn’t make a difference. I get it, but I’m only going to go so far with surgeries.

Anyway, best of luck to anyone dealing with EMPD. Hopefully my story has helped someone:)

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Replies to "Hi all. New to this page and just diagnosed with EMPD after a year of missed..."

@catlazz, it's high time I check in with you. How did surgery go? I'm hoping the scoping of the bladder and anus didn't reveal any unwanted surprises. How is the recovery?