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.

victoria15 | @victoria15 | Jan 22 3:05pm

In reply to @victoria15 "On January 18, I had Moh’s Surgery on my vulva. It took 4 stages, but I..." + (show)

I should add that I am recovering nicely, and though sitting is a little uncomfortable, I am very glad I chose Moh’s surgery rather than a partial vulvectomy!

lrcg | @lrcg | Jan 23 3:35pm

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

victoria15 | @victoria15 | Jan 23 4:02pm

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

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

victoria15 | @victoria15 | Jan 23 4:27pm

https://www.medifind.com/
This will help!

victoria15 | @victoria15 | Jan 23 4:30pm

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

victoria15 | @victoria15 | Jan 24 9:50pm

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!

lrcg | @lrcg | Jan 25 9:41am

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. 🙏🏽

victoria15 | @victoria15 | Jan 25 10:21am

In reply to @lrcg "Thank you for all of this and your humor. I am in Washington State. I will..." + (show)

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

victoria15 | @victoria15 | Feb 18 7:37pm

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!

lrcg | @lrcg | Feb 23 2:48pm

In reply to @victoria15 "Update on my EMPD journey. Diagnosed with EMPD on Dec. 13, 2023 Sent to an assigned..." + (show)

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. 😉

View More View Less

Please sign in or register to post a reply.