Has anyone had Paget's disease of the vulva?

Hormones: My lesions reappeared during each of my 3 pregnancies. 1st pregnancy: immediately after delivery, and was clearing up at first follow up.
2nd pregnancy: lesions returned immediately after delivery, biopsies at first follow-up. Results dismissed as ‘too rare’ and ‘a mistake at the lab’. 3rd pregnancy: lesions appeared within first 3 months..differences were that I was working long hours, drinking a lot of milk at work, gained twice as much weight, and was wearing lycra pantyhose and sitting in a cigarette smoke-filled office. Incredible stress at work and home were probably contributing factors. My beloved gynecologist/obstetrician confessed that this was obviously out of his realm of expertise and got me into see Dr Raymond Kaufman, Dean of Baylor Medical School. He was old-school sharpened bamboo, shave off thin layers from his wheel-chair wonderful. He warned me that continuing the pregnancy was dangerous for me, but that the baby would be unaffected if I survived to full term. Worst lesions ever, excruciating pain. Deep biopsies performed on delivery table immediately after birth of my son. Spinal block lasted 2 days, returned home to recover and prepare to be gone to Houston for 2 to 3 weeks. An angel for our church cared for my family. Dr. Kaufman did the surgery at Texas Children’s Hospital..making it impossible for me to feel sorry for myself while babies were braving bigger battles. I was out in 11 days instead of 21. The aftercare at home was intense, and I busted a staple while lifting my baby, but it was all survivable. We lived 3 hours from Houston, so I had to just ‘figure it out’. At age 32, they gave me a topical testosterone oil to apply directly to the surgical area..just to try it. Their theory was that if this cancer was triggered by hormones, it might subside with a higher testosterone level. I developed anger issues, so I stopped using it. They told me that I was in early menopause, and were hoping that my cancer would be less aggressive and more manageable. Symptoms were in steady decline after 1987 birth of last baby and tubal ligation at age 31, and at age 39 I had a hysterectomy in 1995. At age 46, I had a final major surgery, but left Tulane hospital in New Orleans after 3 days. Prayers work. I’ve been OK since.

I have not commented lately because I felt that I had offered all that I could about my Paget's journey, but my heart goes out to you with your bravery with dealing with this horrible disease with young children.
My only new offering at this time is that my Dr. is Namita Khanna at Emory in Atlanta. Her only offering has been surgery, but my research suggests that is the best bet for Paget's at this time. I called Mayo & discussed my situation with the kind person who answered & she agreed that Mayo had nothing more to offer, but of course I was welcome to come. Early on I went to 2 other gynecological oncologists with no other ideas. Dr. Khanna is professional & empathetic & most importantly, a good listener. I have had 6 surgeries with no invasions into lymph nodes so far. I go every 3 months. I would NOT go to a PA for this disease.
Last note: Emory is a teaching hospital & I see, in addition to Dr. Khanna, nurses, medical students, residents, those seeking fellowships, etc with each visit. Dr. Khanna & I agree that over the last 10 years I have helped to educate at least 100 medical personnel about Paget's.

@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.

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.

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.

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.

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