Rare Cancer: Gynecologic Extramammary Paget's Disease

I am so sorry you have gone through so much. I have had Lichen Sclerosis for years and recently had a biopsy and was diagnosed with non-mammary paget disease of the vulva. Seeing a gynocological oncologist. He said he does not want to remove as it just comes back. I get that but frustrated with credible information on best treatment options such as the Immiquimod cream. After performing an assessment the dr. found another area that he "didn't like at all ". So now I have surgery scheduled to remove that area that was not biopsied. Very frustrated 🙁
Did you have any testing for underlying cancer?

Good morning, Naomi: By surveillance I meant: once a year I go to my OB/GYN for her to look at the vulva area; I would go twice a year if I could, but I think that is what I am allowed on my Medicare plan. She has spotted manifestations of EMPD every time. This is what I meant by visuals. Of course she uses a very strong light to observe. Then either she does the biopsies or has my oncologist perform them. Every time I have a biopsy, it is positive. Then, I start Imiquimod like same day or day after for about 8 weeks. After the treatment I go see my oncologist. Imiquimod treatment was suggested by another gynecologist skin specialist who knows both my Ob/GYN and my oncologist. I am being told EMPD is slow at developing but then I read a comment on this site from a lady who said, her EMPD was very aggressive and now the cancer has spread. I was told Imiquimod was originally used for other skin related treatments. I would not have known I had EMPD of the vulva if I did not go to my last Pap Smear at 65. Both my OB/GYN and my oncologist encourage me to tell all my friends and others to keep going once a year for the visual. My OB/GYN thinks that Papilloma virus might be causing EMPD but there is no supporting evidence yet. However, my oncologist says that she does not think so. In any event: I had Papilloma virus about 20 or 22 years ago and went through burning of the tissues affected around the cervix. My OB/GYN is guessing that then the doctor may have not gotten every cell affected by Papilloma Virus. Now children (boys and girls) are getting the vaccination.

@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 😔 is on this journey.