Has anyone had Paget's disease of the vulva?

@bouf1948

I have not used the cream. I was told it was just for areas that they couldn’t do surgery on. If you trust your dr he would know but if you’re concerned a 2nd opinion may make you feel better. I have had 4 surgeries, 1 about 5 yrs ago and then in the last two years I have had 3 more. The Pagets was behind my clitoris and kept coming back. I elected to have my clitoris removed with this last surgery cause I was tired of surgeries every 8 months. It does come back and my dr told me it will always come back. Hopefully this last surgery will last longer. I took the medicines they prescribed for the first three days then tapered off. I also made meals for the freezer that I could just heat up. Unless you have someone to cook for you!

Please reach out if you have questions that I can help you with! Good luck!

@foster14 I live alone, so I think I’ll have some food handy or order in. I think I’ve about decided I don’t need a second opinion. I don’t find varied information on the treatment - just surgery beyond the margins and cream. Does it always come back for everyone? It must’ve been a very painful surgery for you - I’m very sorry. Will it still come back after your big surgery? What kind of doctor did your surgery? Will I be able to sit or walk or drive? They don’t know what causes it, do they?

@bouf1948 It would be good if they could check if it is invasive or not. Mine, it turns out, is among the 12% non-invasive. I use prescribed (in Canada) cream. I also refused massive surgery (fortunately) because I was diagnosed with metastatic breast cancer not long after 8 + years with what was finally biopsied and diagnosed as Paget's. Curious - the anti-estrogen meds have decreased Paget's symptoms as mine is estrogen-mediated and the surgery would have been, for me, a huge mistake. I'm wondering if docs test for the estrogen link.... before some surgeries. Praying for you.

@bouf1948 Hello, Carole Ann and welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. It looks like you've already received some good information from @foster14 and @ameliae. You've come to a good place to read about the experiences of others and to get support. You likely noticed that this particular discussion is quite long as it's an ongoing and active discussion with information from others including their own experiences.

It's good that a biopsy was done and so now you have better idea of what's happening. Do you know what your physician plans for the surgery they recommend? Some of the questions you've asked could be answered in a consulting appointment with your doctor. Also, if you are on the fence about surgery or type of surgery have you thought about getting another opinion from a different doctor? Getting another opinion is very common and many of us have done just that.

What other questions do you have?

@bouf1948
My dr said it will almost always come back. He is the top doctor in the PNW and has written books and trained others. Pagets is such a rare disease. My primary care dr didn’t even know what it was. mine was made worse by my incontince. It just burned. I’m hoping that it doesn’t come back for awhile. My dr just retired and supposedly they have found a replacement for him but she isn’t as familiar with Pagets. So this could be interesting. Good luck with your surgery! Cold packs on the area help after surgery.

@foster14 did you can control your Paget’s with cream? Does it burn really badly? How long have you had Paget’s?

@ameliae I go to the doctor Tuesday - he only sees patients Tuesdays. He has experience with Paget’s - he was listed as distinguished on Mayo Clinic’s list of doctors. I’m praying I can use the cream only. I’ve been using all kinds of creams, like steroid creams, diaper rash creams, Vaseline, but none of them worked. If I do nothing, it’s better. I’m glad the cream worked for you!

I’m very sorry you have to go through all of this - it’s almost more than a person can take. I also have other autoimmune diseases, like a rare eye disease that nobody is researching - I guess because there’s no money in it. Do you use the cream in addition to the surgeries?