@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.