Has anyone had Paget's disease of the vulva?

Yes! After reading comments on the my empd facebook page, I realize that because of finding them, my results were way better than many. I returned for my post op on Feb. 13. He declared me cancer free. I return to see him in 4 months to see how I am doing, and then in 6. I do not mind going often as if it comes back ( and I feel like it won’t, but hearing the stories of others, I won’t be shocked), I can get him to get it. Pain is absolutely gone and has been. Initially, it stung when I peed, but he gave me Mupirisin ointment, and that did help. I did have 4 stages of Moh’s before he got all clear margins. He repaied with an artificial graft, and it hardly looks any different. I can answer yes I am able to be sexually active with my husband. The only difference was my nerves (think new bride), and things had tightened up. But no pain!
This was primary and non-invasive, so I must have gotten it early. But when I think of almost having a partial vulvectomy with no knowledge of the margins, I cringe. I almost went there! The Moh’s was not unbearable. They only used lidocaine & epinephrine, and I was wide awake, nervous, and running my mouth the entire time. I would do it again rather than general. Dr. Dany explained everything. Hope this helps!

My doctor is a very young man, but he is brilliant. The people working with him are wonderful, and I have added him to the “my empd” list of doctors. I highly recommend him! The link below is for his info.
https://www.vcuhealth.org/find-a-provider/mohammed-dany

This is so helpful in knowing what to ask I have 2 new Drs that I am seeing in March. If you think of anything else let me know. I am also finally up and running with my FB so I can get on the myempd.

Are you seeing a dermatologist or a oncologist gynecologist? They do things differently, I think. The gynecologist treats it as a gynecological cancer; whereas, a dermatologist treats it as a skin cancer in an unusual place. (This is my opinion of the difference.). Those ladies who have had Moh’s on my empd fb page had it done with either a plastic surgeon or oncologist assisting. Mine did it totally by himself. When I asked the onc/gyne about Moh’s, he said “no,”. I asked about Imiquimod, the cream too, and he said “no.” No explanation for either. I also asked Dr. Dany about the cream. He said no too, but said if I were 95, he would probably say yes. He said, “let’s just get rid of it.” When I first found him, I said a prayer, emailed him, and I asked if he was interested in me (after telling him my history). I had prayed asking God what I should do when I found his email. He emailed me right back, and got the wheels turning. You want someone who will do scouting biopsies ( not the most fun in the world, but not the worst either). I had 5 all down there. You also want someone who will check for underlying malignancies because it could be secondary.). If you don’t want surgery, make sure they are agreeable to try Imiquimod and if not why not. Don’t settle for a no without a reason. Most important, make sure the doctor has interest in EMPD. Dr. Dany had written a couple of papers on it. Look up your doctors and see what you can find on them. I read EVERYTHING i could on mine. Then make your decision. Plus prayers for direction! I give God all the glory for this! My words of the year: last wait and this year trust, and that is exactly what I did! If I had done this on my own, I would have had a partial vulvectomy. But waiting on God’s nudges as weird as I know it seems but I don’t care, it is exactly why things worked out the way it did. So God gets the credit! Can you tell me your first name? I will pray for you! Any other way I can help like research your doctors, I would love too! Going to pray for good results!

Not sure if this is helpful but I just had Mohs a week ago by Dr Mohammed Dany Virginia, Richmond. Commonwealth University. Noninvasive and 5 rounds to clear margins. Great team!

I was diagnosed with primary Pagets on 10 April this year and will meet the gynae oncology team on 29 April. Don't know what to expect from the first consultation, hoping for some real empathy and understanding of this disease as not much seems to have changed in the 100 years since it was first coined. I am also confused as to whether this is a dermatological or gynecological area of concern. Is there such a thing as a second opinion re treatment?

Hi @lydiamae, welcome. Glad to hear your surgery was a success with clear margins. Do you have Paget's disease? Will you need any further treatment?

Welcome, @biancasmythe. It is confusing dermatological vs gynecological. It is my understanding that Paget's disease of the vulva (also called extramammary Paget's disease) is a rare skin cancer that affects the top layers of skin - therefore dermatological. Naturally, the area of the body is gynecological.

I wish you the best for your appointment tomorrow. I'm sure many thoughts are whirling through your mind. Write them down. Start to make a list of questions. Maybe this will help get you started:
What treatment is recommended?
Am I a candidate for surgery? If yes, what type of surgery?
What does it involve?
What is recovery like?
Will I need additional treatment(s)?
What else do I need to know but didn't think to ask?
What is the next step?

After your appointment, let me know if you wish to pursue a second opinion. I can share more about seeking a second opinion at Mayo Clinic if you're interested.

But first things first. Thinking of you for tomorrow. You got this.

@biancasmythe, how are you doing? How did the consultation go? Do you have a treatment plan?

Thank you for asking. I will be on Aldara for 16 weeks and then will ask for biopsies to be done. After that, I may hit a roadblock because no one in Australia has expertise in doing Moh's surgery for pagets (vulva). I am looking in to possibly coming to the states for surgical treatment,

I’m very interested to hear how you make out with Aldara. I have been hearing that surgery is the best option, especially for those that are relatively young and healthy, because it has the best efficacy when it comes to recurrence. (The Pagets doesn’t come back as easily, supposedly.) but who knows? So you are on Aldara because no one where you are does Mohs for vulva? If you want to come to Bay Area, I can link you up with a great Mohs team!