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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Apr 22 11:26am | Replies (232)Comment receiving replies
Hello. My name is Carole Ann, and I was diagnosed a week ago. The dr wants me to have surgery. I’ve had a sore for two years that doctors (mainly one) have been treating with various creams, and I just now had a biopsy. I thought it was from my underwear rubbing against my private parts, but it wouldn’t go away. How do they know if it’s spread? Do they do Mohs type surgery? I am single, and I live alone. I don’t know how I could not walk, drive, etc. for a month. Do they ever do that special cream you talked about alone, or is it always in connection with surgery? Thank you for any tips you can give me.
Replies to "Hello. My name is Carole Ann, and I was diagnosed a week ago. The dr wants..."
@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 Hi there, I only found this site a week ago and see most of the women have had surgery without doing the cream first. I live in Australia and was diagnosed with Pagets last August but decided to do the cream first. I am clear as of two months ago. I did 7 weeks (3 nights, Monday, Tuesday and Friday) with the cream then stopped for 1 week did another 3 weeks then again stopped for a week then 10 days and now 2 months clear.
Fingers crossed it doesn't return any time soon.
If you decide to use the cream make sure it is only a thin layer of cream.
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@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.