1. < Gynecologic Cancers

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.

lrcg | @lrcg | Feb 23, 2024
In reply to @victoria15 "Yes! After reading comments on the my empd facebook page, I realize that because of finding..." + (show)
@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
victoria15 | @victoria15 | Feb 23, 2024
In reply to @lrcg "Wonderful news! Is there follow up? Can you say more about the dermatologist? Also can I..." + (show)
@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
2 replies
lrcg | @lrcg | Feb 23, 2024
In reply to @victoria15 "Update on my EMPD journey. Diagnosed with EMPD on Dec. 13, 2023 Sent to an assigned..." + (show)
@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
1 reply
victoria15 | @victoria15 | Feb 18, 2024

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
1 reply
victoria15 | @victoria15 | Jan 25, 2024
In reply to @lrcg "Thank you for all of this and your humor. I am in Washington State. I will..." + (show)
@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. 🙏🏽

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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
lrcg | @lrcg | Jan 25, 2024

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
1 reply
victoria15 | @victoria15 | Jan 24, 2024

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
victoria15 | @victoria15 | Jan 23, 2024

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
victoria15 | @victoria15 | Jan 23, 2024
In reply to @lrcg "I need to find a Dr. that I trust that does MOH's. I didnt get this..." + (show)
@lrcg

I need to find a Dr. that I trust that does MOH's. I didnt get this the first time. I have also never been offered a CT Scan to look for more. My Gyn/Onc at UW in Washington told me that was all that could be done. It is so sad for me and others. I did find this website just last week and thank you. I have some calls into different Drs. Nothing back yet. Thank you, Thank you, for your information and kind words. Healing takes a while hope your doing okay. The group is on FB? I dont have FB but would be willing to get it to be included in the group. Thank you Victoria! I hope you are clear as well and if you are the praying type I will pray for you. LRCG

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First, let me say that YES, I am the praying type just as I know that God directed my every move on this, so your prayers are welcomed!

It is a secret facebook group. If you scroll to the bottom of myempd.com, it will help you get in. Of course, you first need a fb account, but it doesn’t mean you have to use it for more than the board. Way more help there than here!
Are you in Washington? I am in Virginia. Try this: look at medifind.com
Put in Extramammary pagets disease under condition you are looking for and your location. That is how I found the doctor who did my moh’s. Otherwise, I would have had a partial vulvectomy without scouting biopsies, etc. and no CT scan to check for malignancies. See if you can find a doctor with experience in this. I am healing well! Seeing the doctor tomorrow.
Saying a prayer for you now, friend!
Victoria

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