Has anyone had Paget's disease of the vulva?

@chaka67 This is my first entry on the Mayo site and have spent 2 days going thru the very helpful information from others with the same problem. I live in Australia and know only one other person here with the same cancer.
My initial thought of something wrong started when I lost weight, around 8 kilos (18lbs) and 18 months on I was diagnosed with extramammary pagent's disease of the vulva last August 2025. I had had the itch for about 9 months and thought it was thrush. After seeing my doctor and having a biopsy do it came back with the above results and stating that there maybe a primary cancer elsewhere. I had a PET scan which came up with a suspicious thyroid nodule (of which I have many) but this was cleared after another biopsy. Doctors gave me the information about surgery but I opted for the Aldara cream. The doctor emphasized that others had found the cream intolerable.
I spent 7 weeks initially using 3 times a week and stopped for a week. Managed another 3 weeks straight, stopped again for a week and managed another 10 days with the cream. Completed all up nearly 12 weeks of the 16 weeks advised.
I have now been 2 months clear and keep a weekly check of any outbreak.
To help me stop worrying whether there is cancer elsewhere in my body I am booking a full body MRI scan.
Hopefully my story will help others make informed decisions.

I have not joined the discussion for awhile because I felt I had no more to contribute, but my heart went out to you when I read about your recent Paget's surgery, so here goes. To reiterate, I have had 7 Paget's surgeries since 2013, and I am headed for my 8th. The first was the worst & the most extensive. Good news: I have recovered from them all! In addition, none have been invasive. So I keep plodding along because there is no known cure and no known explanation as to why the Paget's continues to recur.
For the recovery period, always wear skirts (pretend it's a fashion trend) & mostly no underwear. No PJ's; only nightgowns. Use the "Cleopatra" model of sitting, laying back with legs up & open as much as possible. You want light & air & as little irritation as possible. Squirting water on the wound in the toilet & in the shower & drying with a gentle hair dryer better than touching or soaking. Several of surgeries became infected. Not surprising considering the location. Notify dr as soon as you suspect that or even go to an ER. You want to begin an antibiotic ASAP. In addition to healing yourself, you will be educating the ER staff who have never heard of Paget's or seen what a vulvectomy is like. Sorry for the flip remarks, but a sense of humor is required to cope with this miserable & rare disease. Also do not feel embarrassed. The vulva is just a body part. People used to say "breast cancer" in hushed tones & now they have parades & wear pink. I would be thrilled for a parade for Paget's & better education in the medical field & of course, more research.
Good luck. Hopefully, when you are healed, you will have at least a good two years free & possibly a lot longer.
Also, as a personal preference, I would only use a female dr. who can relate to the extremely sensitive nature of having a vulva!
Hopefully, you will

@bouf1948 What supplies and information were sent home with you so that you can recover more comfortably from the surgery? Perhaps the home health nurse will have suggestions for you?

@boomerotr cream? My doctor said we may have to use cream in the future

@foster14 this was a very painful surgery - not like yours. I was operated on Monday at 7:30 am, and I spent two nights in the hospital. I came home today. I don’t feel I was ready to come home. I am having trouble sitting and getting up. I had a left side vulvectomy with laser back to the anus. I need a shower, but I don’t dare attempt that alone. Home health care is coming tomorrow. If it comes back, I’m wondering if it will be as painful next time.

I have had 2 surgeries for Paget’s of the vulva. After the first one I found that I could sit comfortably on a larger throw pillow that was about 2-3 inches thick on top of my recliner seat. I could walk without issues. The second surgery was in an area that I don’t sit upon normally so sitting was no problem. Just 10 days ago I was diagnosed again with 2 new areas of Paget’s, one at the top of the area perviously opérated on that the other at the bottom of the area previously operated on.

My Dr spoke of a new/off label use for Paget’s that has been recently shown promise. Have any of you used it and how did it help you?

@bouf1948 I can imagine how frightening this is for you. You and your doctors cannot know the outcome of the surgery ahead of time. For any of us, that unknown is what drives the fear and anxiety. I've had so many times over the years that my anticipatory fear and anxiety has made it difficult for me to function. I'd like to say this has become a little better over time as I've learned some coping skills to get through these periods particularly as it concerns my health and cancer.

We have a tendency to leap to the worst conclusion for ourselves. For me, it was, what if my cancer comes back again? What if it's spread? What if I become frail and sick during treatment like happened with both of my parents? All of these "what ifs" get my fears to spiral out of control. So here is another "what if". What if none of these things happen? What if I continue to live my life day to day and do the things that are meaningful for me? What if your surgery goes smoothly and your surgeon tells you that the margins look very good? What if your recovery is smooth, and you take that time for yourself to practice the care that your doctors recommend?

Can you challenge your own thoughts on this? One of my favorite sayings is "Don't believe everything I think". If there is no factual evidence for my thoughts perhaps these are my thoughts and not the reality.

Your plans to spend some time with your cousin at their house sounds good. Since you live on your own perhaps the company of your cousin while you recover from surgery will be something to look forward to.

I will be thinking of you on Monday, 3/2 during your surgery and your recovery. I wish for you compassionate care from your surgical and recovery team.

@janeellenmc I’m having surgery Monday for Extramammary Paget’s for the first time. How are you doing. Have you had to have more surgeries? How hard was the recovery period for you? How did you sit? Did you shower every day? I live alone and I don’t know how I will be able to function.

@naturegirl5 I’m having surgery Monday 3/2 at 7:30 am to remove the cancer to a margin where it comes back no cancer. I’m kind of scared because I don’t know how invasive it is and the doctors don’t either at this point. I’ll spend the night in the hospital and then decide if I want/need to spend some time at my cousin’s house. I don’t know what to expect after surgery. One lady on here said she couldn’t function well for four weeks. The doctor estimated I’d have 30 stitches. Can anyone tell me if they’ve had similar circumstances.

@foster14 what about the lady that said she couldn’t walk, sit or drive for 4 weeks? That wasn’t true for you?