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Rare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: Jun 6 8:18am | Replies (93)Comment receiving replies
@bijou68
I waa recently dx with vulvar empd at Univ of Chgo after 8 months being treated with Lichen Sclerosus. They used every "gold standard" topical on me and it seemed like I was getting worse. A scrape biopsy at U of Chgo was 1st done by a dermatologist and empd was dx. I was then sent to another doctor, gyne/oncologist that did 2 more punch biopsies with the same empd dx. The skin being primary.
I have been reading numerous articles about vulvar empd. There is Mohs, modified Mohs procedures that saves as much good tissue as possible. Then there is WLE which stands for Wide Local Excision. After all my reads this last one has a high recurrence. I am on the midst of seeing if U of C does Mohs as I don't want to have this keep coming back.
I have also read up on Imiquimod and am scared to use this. How bad 8s the burning/oozing/
Stabbing and having to use for months. When you're reoccurs is the area reddened, itching, burning? What do you use for barrier cream that works?
I pray they find a better resolution for all of us and I also pray for peace of mind. I'm sorry you and everyone else đ is on this journey.
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@quest70 Youâve shared your already long journey with vulvar extramammary Pagetâs disease. Iâm sad and fatigued at the same time while reading what youâve been through. You are being treated at the University of Chicago Medical Center. Is that correct? How is recommended by your team/physician at University of Chicago?
There are other discussions here in our support group of vulvar cancers and treatments. The women share their experiences with treatments and creams they use to try and reduce the burning and itching.
Try this. Type âvulvar creamâ or just âvulvaâ into the Search box at the top of this screen. I will do the same and letâs see what wisdom we turn up.