Rare Cancer: Gynecologic Extramammary Paget's Disease

How are you doing?

I can’t tell you how sorry I am to read this. Your whole journey with EMPD just takes my breath away, and now to read that it’s a fast moving train. I hope the radiation treatments on your spine help. Please know I’m rooting for you.

I'm so sorry 💔 I have prepared for my death, saw "the light" ow fo

My EMPD has now spread to my liver and my spine(L-4). Radiation of the L-4 starts tomorrow. 10 consecutive treatments. Too many tumors on the liver to radiate or remove surgically. I was told that my EMPD is “a fast moving train.” We need to stop
or slow down the spread. I am still getting immunotherapy ever 3 weeks and have refused chemo. I do not want to spend whatever time I have left as sick as chemo has made me.

Thanks so much for the check in! It’s been 2 weeks since surgery and all is ok. There’s been very little pain which is saying a lot for 30+ stitches in my vulva:) Doc just messaged me yesterday to say there was no underlying cancer according to pathology but that there are multiple places where the margins aren’t clean. No cancer anywhere else so far!! This is a really frustrating cancer because the only treatment is more surgeries. Doc said even if it spread and the new spread was treated with radiation/chemo, the Paget’s of the vulva would not respond. So it seems I’ll always have an active cancer of the vulva and I’ll be checked every 3 months for the next few years. But, as I’ll tell anyone who’ll listen, I am actually lucky because I know I have cancer, vs so many who have it and don’t know. 🙂

@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?

Oh no. How are you doing now? I’m so sorry to read that it’s spread. I’ve read EMPD is often misdiagnosed ~ but for 6 years? That’s terrible. I’m sending you good thoughts and I appreciate your comment.

I love your positive attitude! EMPD I was misdiagnosed for 6 years by multiple gynecologists and dermatologists who prescribed steroid creams snd/or herpes medication. 2021 a biopsy revealed EMPD. Surgery was easy, no pain afterwards and fast healing. Although doctors thought it was non-invasive, it was not to be. One month later it had spread to my lymph nodes.

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:)

Thank you for the information. I filled out the information for a EMPD clinical trial.
My history and experience will be helpful to early diagnosis.
Nancy Gilligan