Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

I am about to have my 6th vulva surgery for Paget's of the vulva in less than 10 years. That means for about a month after surgery I cannot drive, sit or walk, & I am the my husband's caregiver.
I also had a mastectomy 10 years ago, but was told they were unrelated. Also unrelated is any support for Paget's disease. They have marches for breast cancer. Yet I have never met someone with Paget's. Even this message box underlines the word Paget's as if I am misspelling the word!!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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!

REPLY

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!

REPLY
@victoria15

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

Jump to this post

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.

REPLY
@lrcg

Wonderful news! Is there follow up? Can you say more about the dermatologist? Also can I ask how invasive the Moh's surgery was? It seems now one asks the tough questions and no one talks about whether they are still sexually active or want to be. I hope this isnt to much information. 😉

Jump to this post

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

REPLY
@victoria15

Update on my EMPD journey.
Diagnosed with EMPD on Dec. 13, 2023
Sent to an assigned oncologist gynecologist Dec.20, 2023
Planned partial vulvectomy Jan. 12. 2024.
Did my research! Found myempd.com
Decided to get a 2nd opinion, and saw a dermatologist with experience in EMPD Jan. 8, 2024. Cancelled vulvectomy surgery.
5 scouting biopsies to determine EMPD spread and whether or not invasive Jan.9, 2014. (All were negative for EMPD except the original.)
Had Moh’s surgery Jan. 18, 2024 (4 stages but all margins clear)
Had CT with contrast dye on chest, abdomen, & pelvis to make sure this was primary (already had other things done colonoscopy, etc) Feb. 1, 2024
Post op Feb. 13, 2024. Declared cancer free!
Be your own advocat!

Jump to this post

Wonderful news! Is there follow up? Can you say more about the dermatologist? Also can I ask how invasive the Moh's surgery was? It seems now one asks the tough questions and no one talks about whether they are still sexually active or want to be. I hope this isnt to much information. 😉

REPLY

Update on my EMPD journey.
Diagnosed with EMPD on Dec. 13, 2023
Sent to an assigned oncologist gynecologist Dec.20, 2023
Planned partial vulvectomy Jan. 12. 2024.
Did my research! Found myempd.com
Decided to get a 2nd opinion, and saw a dermatologist with experience in EMPD Jan. 8, 2024. Cancelled vulvectomy surgery.
5 scouting biopsies to determine EMPD spread and whether or not invasive Jan.9, 2014. (All were negative for EMPD except the original.)
Had Moh’s surgery Jan. 18, 2024 (4 stages but all margins clear)
Had CT with contrast dye on chest, abdomen, & pelvis to make sure this was primary (already had other things done colonoscopy, etc) Feb. 1, 2024
Post op Feb. 13, 2024. Declared cancer free!
Be your own advocat!

REPLY
@lrcg

Thank you for all of this and your humor. I am in Washington State. I will go to all of these sites and will after all these years get a FB account. Continued prayers for all with EMPD. 🙏🏽

Jump to this post

If God hadn’t blessed me with a sense of humor, I might crumble. Besides, laugher is healing! So, as I sit here on the reclining couch like a big Buddha while the stings go away, I send you all laughter and healing vibes, and I pray for all of you to find your path out of this stuff. God is leading me. He led me here!)
Blessings to you all!
Victoria

REPLY

Thank you for all of this and your humor. I am in Washington State. I will go to all of these sites and will after all these years get a FB account. Continued prayers for all with EMPD. 🙏🏽

REPLY

Dr says I am healing beautifully.
Y’all seek second and third opinions until you find a doctor that answers your questions.
Some people are being helped with Imiquimod. Visit myempd.com. They are the reasons I avoided a partial vulvectomy! Blessings to you all!

REPLY

https://www.myempd.com/
This is way easier to understand than Dr. Google. This stuff is like Kudzu (folks from the south will understand)! It is hard to destroy!

Wishing you all blessings and good health!

Victoria

REPLY
Please sign in or register to post a reply.