Rare Cancer: Gynecologic Extramammary Paget's Disease

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

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?

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

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.

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

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.

Hi @worried123, that is so confusing when you get differing opinions from experts. I'm tagging @victoria15 @ameliae @chaka67 @pugpeople @catlazz @blueeyedkygirl50 @moffitt to make sure they saw your post and can share the treatments they had.

Worried123, have you decided to go ahead with chemo or immunotherapy? If yes, what regimen are you getting? How are you doing?

Thanks for the reference to myEmpd.com. I've read everything I found on googlescholar. I was diagnosed in Sept 23, had surgery Oct (one lymph node involved), did radiation with chemo (cisplatin) Dec-Jan 24. Having PET/CT tomorrow. One oncologist is suggesting additional chemo and one is suggesting immunotherapy. Surgeon said no to more chemo. First radiologist said yes to chemo. Second radiologist says no evidence more chemo will help and if i do anything, it should be immunotherapy. Docs are from excellent hospitals - Cedars Sinai and UCLA - just too little research. Anyone doing immunotherapy?

I was diagnosed with EMPD Dec.. 18, and I was immediately sent to a gynecologist/oncologist. I met him, and prepared for a partial vulvectomy. I had NEVER heard of this disease before. Fortunately for me, I found myempd.com. I learned so much! The week before my surgery was scheduled, I contacted a dermatologist (The director of Moh’s surgery) at VCU Health in Richmond, VA. He emailed me back, and I cancelled the vulvectomy. I went to see him,and the first thing he did was scouting biopsies to see where and if the EMPD was going. All the biopsies were negative except for the original. Since I had had my preventive maintenance tests (pap, colonoscopy mammography), he sent me for a CT with contrast dye on my chest, abdomen, & pelvis to make sure there were no underlying malignancies. Everything was negative which meant my EMPD was primary. I went through 4 rounds of Moh’s surgery and had all clear margins. My Dr told me with all that, I had a 5% chance that it would come back. I say that means 95% chance it won’t! He declared me cancer free Feb. 13. If I had not found the myEmpd.com site, I would have had the partial vulvectomy with guesses at the margins (and where mine was heading, the vulvectomy would not have gotten it). This means I would have been right back for another surgery. Visit the myempd.com site and join the secret facebook group if you can. The 400+ members share their experiences with this scourge that is so much more helpful than any other place.
God bless you all in this journey!

Are we into private messages here? Or have I still not figured it out? If not, chaka67, could you pm me?