Has anyone had Paget's disease of the vulva?

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

On January 18, I had Moh’s Surgery on my vulva. It took 4 stages, but I was left with clear margins. All the scouting biopsies done the week before revealed all negative for EMPD except the original. Hopefully, it is gone and won’t return though there is a 5% chance it will. Feb 1, I go for a CT scan with dye to make sure there are no underlying malignancies. Then I hope to put this behind me.

Hello,
I have recently been diagnosed with EMPD of the vulva. I am scheduled for a partial vulvectomy , but I am seeking out a second opinion first. This has all been too rushed. I started with an intermittent itch the summer of 2022. Last summer, I visited my gynecologist. She thought it was contact dermatitis. She gave me hydrocortisone cream. It helped at first, but the intermittent itching continued. In December, I went to her for a pap, and we decided a biopsy was in order. The next thing I knew, I was scheduled to meet an oncologist/gynecologist. The surgery was scheduled. Meanwhile, I have researched and joined a group called myempd. Go visit the website myempd.com. The people in the group have all experienced empd. It is NOT hpv driven. No one knows why it occurs! Good luck to you! I hope you find your answers!
Victoria

Relief to have drains gone. I had them with my mastectomy. Could enjoy my shower afterward. Simple joys help.
Doesn’t remove pain & anxiety though, but you sound relatively calm. I applaud you.
Could be dumb question, but what will they radiate? You had clear margins, I believe, & Paget’s skin removed in surgery. Did lymph nodes indicate metastic location? Fortunately for me, after 10 years, I seem breast cancer free. I go to oncologist on October 10 after my last vulva surgery on May 2. No clear margins then. Not sure what comes next. Going to try using Aldara cream again. Not up for more surgery this soon.
Take care. I’m trying to enjoy each day, especially the lovely Fall weather here in Southern US.
BTW: Ignore any questions that you don’t wish to share. I wish you all the best.

As I have been sharing info about Paget's of vulva in private messaging with another member, I have realized that there is so much I have learned over nearly 10 years and 6 vulva surgeries that I would like to share with anyone with a gynecological cancer. So here goes:
1. Do not be timid or ashamed. I would gladly share everything I know with anyone who would listen. If people are unaware, especially medical folks, you have to educate them, & be your own advocate. Always take someone with you to appointments if you can & take notes & ask questions! And do your own research! We are blessed to be living in the age of the internet. Use it.
2. There is a medication called imiquimod cream to use in lieu of vulva surgery for Paget's, for those who opt to not have surgery. Some folks have had good luck with that. I tried it for awhile & found it to be difficult to tolerate: burning & itching. But I might consider it again when I'm told I need another surgery.
3. Paget's vulva surgery is not a "once & done" surgery like appendix removal. For no rhyme or reason, it continues to return. So consider carefully the big picture of how your choices effect the quality of your remaining years. The profile for getting Paget's cancer is white, 65-75 yr, female. Always exceptions, of course.
For example, a male oncologist wanted to perform a "radical" vulvectomy, which included removing my clitoris, & he could "reconstruct" that for me if I wanted. I sought a 2nd opinion. I know it is just a body part, and if I thought it would save my life, I suppose I would consent, but this surgery is already mutilating, & so I prefer to keep as much of my body in tact while I can. And there are no studies I a have found that support any more success in eliminating Paget's with a radical rather than a partial or even a simple vulvectomy. I don't regret that decision.
Thanks for listening. Hope some of this is relevant to someone.

Very typical. In fact, depending on infections, slow wound healing, how extensive the surgery, could be longer than a month. So sorry to hear about your diagnosis, but happy to communicate with another person with this diagnosis. As you are learning, no one out there who understands.
I just completed my sixth surgery May 2. Unfortunately, no clear margins, so my journey continues until/unless becomes invasive which would put me on a worse path. Sadly, no cure, no hope for research because so rare.
Good news is that some surgeries' healing time better than others, and I have returned to normal activities each time. Return to wearing skirts again while healing & carrying pillows with me everywhere.
Good luck. May I ask your geographic location? No need to be specific: North, South, Europe, etc. Thanks.

@lrcg My cancer is Paget’s of the vulva. It is HPV driven and invasive. I go to Karmanos Cancer Institute in Lansing, MI. I see Dr Jayson Field. He is a gynecologic oncologist. He is a professor of Obstetrics, Gynecology and Reproductive Biology at Michigan State University. He is also the director of the Division Gynecologic Oncology. If you Google him you will find more information.
I had a radical vulvectomy with sentinel lymph node removal. No radiation or chemotherapy. I am now cancer free. Because it is invasive it could turn up in another area but I don’t think about that often. I have checkups every 3 months.
I am 67 years old. Recovering from the surgery wasn’t a piece of cake, but I am glad I had it.