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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: 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
Replies to "Hello: May I suggest that you reach out to the Mayo Clinic in the US. I..."
I also have had success with Imiquimod / Aldara
First having excision without clear margins Pagets came back almost immediately
I changed Drs as the UW Dr said there was no other treatment than excision which was going to leave me mangled and completely disfigured. Found a new Dr at OHSU in Portland Oregon
Its a haul but closer than Minnesota or New York.
I have used Aldara for 3 months followed instructions to the letter
It had its moments I was afraid to think it could work.
Another spot developed during treatment. Its a head banger! Went for the checkup had 2 biopsies Dr didnt sound very optimistic we set up a phone appointment for 2 weeks.
I received a call from the Dr 5 days later that both biopsies were clear of Pagets!
It will likely come back but I would rather use the cream than have surgery or loose
my clitoris.
I am 60. Keep searching for the right Dr dont give up
LRCG
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Thank you for your guidance. I will definitely search for Mayo branches and contact them. I had all the internal tests done and there was no evidence of internal problems in the bowels or uterus.
I need to find the right clinic before my test results are ready in two weeks. Considering the rapid progress of the disease, I welcome any suggestions for help.