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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)Comment receiving replies
Hello. I read your message and would like to know how the surgery went?
I am a 37-year-old woman who underwent surgery for extramammary Paget's disease twice in the last four years. I wanted to get more information about the countries that perform specialized surgery and also the medicinal methods.
Replies to "Hello. I read your message and would like to know how the surgery went? I am..."
Hello: May I suggest that you reach out to the Mayo Clinic in the US. I read that there are three locations. Perhaps Colleen can stir you in the right direction. Or the Cleveland Clinic as one of us suggested. I find you much too young to be dealing with this strange disease!!!! I am curious to find out from you and from all of you if any of you had Papilloma Virus? About 25 years ago or some three quarter of my cervix was contaminated by PV. The gynecologist had burnt the affected area and after numerous Pap Smears i was fine. Until manifestations on my vulva 3 years ago and that is when i receive the diagnosis of Paget's Disease of the Vulva. I am treated solely with Imiquimod which has also another name which escapes me at the moment: Aldara??? It is a cream. It has discomfort but it is getting easier... I was recommended to have the clitoris removed and i had scheduled the surgery when my oncologist informed that Imiquimod showed successes. So i tried. I was 65 when diagnosed. Even though no one seems to know exactly about the proper protocol (as not enough studies have been done so far), because the growing number of people affected, research will pick up some speed. As far as I know it is my only foyer of pre cancer or cancer manifestation. Cross fingers. Please do keep us updated. Prayers and happy thoughts
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Hello @amapola1987 and welcome to Mayo Connect. It sounds as if you have been dealing with extramammary Paget's for some time now and I can understand that you are looking for some other treatment options.
You do not say where you reside, so I don't know what country (or countries) might be near you. However, please know that Mayo Clinic does see international patients. Here is a link to appointment information, http://mayocl.in/1mtmR63.
Here is some information from Cleveland Clinic in the U.S. about this disorder and what treatments are offered at Cleveland Clinic,
https://my.clevelandclinic.org/health/diseases/24266-extramammary-pagets-disease
From reading the article from Cleveland Clinic, I see that this can be primary or secondary Paget's Disease. Do you know if yours is primary or secondary (from another type of cancer)?