Rare Cancer: Gynecologic Extramammary Paget's Disease

Hi there!
I am responding. From what I have read, chemo is not offered for EMPD. However, things may be different if it is found in a lymph node. My EMPD was primary and non invasive. I was diagnosed December 13 having had it for 1 1/2 years that I know of. I had scouting punch biopsies done first. They came back all negative except the original site. I had a CT with contrast dye done on my chest, abdomen & pelvis. I had no underlying malignancies. I had already had a colonoscopy, pap, and mammography done along with blood tests—all negative. I was offered Moh’s. My dermatologist did 4 stages and reach all clear margins. He did a Xenograph Advancement flap and closed me up. I healed pretty quickly. He says there is 5% chance it could return which means a 95% chance it won’t. If it does, I think I would do the Moh’s again though I may consider the cream. I am glad it is over at least for now. I will see the dermatologist in June and will continue to follow up with him.

After finishing my 6th round of chemo and immunotherapy at the end of this month, my oncologist will put me on immunotherapy only.

Hi, I’m new to this group and to the EMPD diagnosis. I thought I had LS (lichen sclerosis) for the past 10 years. Finally diagnosed via biopsy with EMPD. Does anyone know about the Mayo Clinic clinical trial for this? I’m curious to find out more.

I am so sorry about your situation! I will keep you in my thoughts. My Oncologist keeps telling me that it is a very slow developing (new) cancer. This shakes my hopes. In my profile, I have recounted my battle with EMPD. Virtual hugs

Welcome, @nomikins. Are you referring to this Mayo Clinic trial?

- Gynecologic Extramammary Paget's Disease https://www.mayo.edu/research/clinical-trials/cls-20387127
"In addition to evaluating treatment outcomes, tissue samples and swabs will be collected as part of this study to allow physicians to better understand Extramammary Paget's Disease (EMPD). The researchers also want to learn more about the microorganisms (microbiome) that live on or near the areas of skin affected by EMPD, in order to better understand this condition."

For more information, you can contact the study coordinator Maureen Lemens C.C.R.C. at (507) 293-1487.

Nomikins, what treatment options are available to you? How are you doing?

@bijou68, oh I just realized that your reply to @nomikins was your first post too. Welcome. Are you currently on treatment or active surveillance?

Hello Colleen: Thank you for asking!
I am not currently on Imiquimod treatment but I am on surveillance. I will be seeing my visual with my OB/GYN August 1. She is the one who spotted the first outbreak almost three years ago. The following August, another OB/GYN did the visual but did not see an outbreak, but when I came back this past August, my regular did a visual and she spotted an outbreak but it was my Oncologist did 3 more biopsies and I started Imiquimod again a week later after biopsy results in September for like 8 weeks. My Oncologist saw me after the treatment. I have EMPD of the vulva. Feel free to contact me when you need to know more.

Sorry, Colleen, just seeing this now. Still learning how to navigate this platform. Thank you for your welcome and questions. Yes, that’s the trial I was referring to, but coming out to the Mayo Clinic right now is not an option.
Right now I am looking at doing Mohs surgery where I live. I am in the Bay Area and the team consists of Stanford doctors. I’m seeing a GYN and a Derm. The Derm is a specialist in Mohs surgery and the GYN appears to be very familiar with EMPD. So I feel I’m in good hands. But, I am hoping to find info. on less invasive treatments, like Aldara. They will review my options with me this Fri but I already know they believe the Mohs surgery is the best option for me. I’ve haven’t had surgery since I was much younger, so this is a big deal for me and I’m pretty freaked out. But keeping it together for the sake of my daughter.

@nomikins Since you are in the San Francisco Bay Area you do have many options for treatment. You write with confidence about your Stanford team. Since the dermatologist specializes in MOHS surgery and your gynecologist is familiar with your diagnosis then I'm thinking you can have confidence in the plans. In my experience having that confidence in my team, as I did when I had surgery in 2019 at Mayo Clinic for endometrial cancer helped me to cope so much better. I kept telling myself how grateful I was that I was going to a Comprehensive Cancer Center with an excellent reputation for my treatment. As are you.

Staying calm in front of your daughter is good but I expect your daughter knows how you feel. If she already knows about the EMPD diagnosis why not let her know you are stressed about possible surgery? I'm suggesting this only because I grew up a long time ago (I'm 72 years old) in a loving home but learned from them to try and hide my emotions. I learned over time that if I can say how I feel out loud and it lets the stress out and then I can cope better. Or maybe you are already doing that?

Will you please come back and let me know what happens at your appointment on Friday?

Aw thank you@naturegirl. I appreciate your advice and your concern. Yes, I already have let my daughter know about my worries. I can’t really hide these things very well anyway. I will let you know how things go on Friday. Many thanks again! For your interest and concern!