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Has anyone had Paget's disease of the vulva?

Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)

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@colleenyoung

@amapola1987, if you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

I'm tagging @chaka67 @ameliae @juju67 @lrcg @ima1survivor @janeellenmc @victoria15 @biancasmythe @lydiamae @bijou68 @joyceinil to bring them back into the discussion. I'm sure you've read their stories in the previous comments and the treatment options they chose.

@amapola1987, I can understand your concern about recurrence after already having had surgery for extramammary Paget's disease twice in the last four years. Has it returned? What treatment options are you exploring?

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Replies to "@amapola1987, if you would like to seek a second opinion at Mayo Clinic, you can submit..."

Thank you for your reply. I first noticed slight changes in the vulvar area when I was 28 years old. It took four and a half years for the correct and original diagnosis about the disease. Using topical medication did not work. At the age of thirty-three, the first two-centimeter deep surgery was performed to completely drain the edges. At the age of thirty-five, the surgery was light and only on the skin. From two years ago until now, there has been a slight discoloration in the same area, I had a biopsy last week and I am waiting for the results and I have not made a decision yet. Given that I am younger, the progression of the disease is worrying. In Iran, there was almost no one except me, or I did not find that he had such a disease, or even that doctors had performed surgery. For this reason, I underwent surgery by the medical team in a private hospital. But I want to stop the progress process and go to a country that is familiar with this surgery as soon as possible, because the disease process in me is faster than two or three years.
Pleae help me about it