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Rare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: May 31 12:36pm | Replies (91)Comment receiving replies
Feb 7 2025
I haven’t checked in for awhile. I thought I had offered everything I could. My update: I had my 7th, yes seventh, Paget’s surgery since 2013 in Dec. 2024. Each time I say “never again” & each time I say, “one more time”, thinking maybe this will be the last one. Never had totally clean margins, but also no invasive cancer, so I guess I feel I’m ahead. I just keep wanting to get rid of as many Paget’s cells as possible.
I unsuccessfully tried Immiquimod two separate times between surgeries. Had burning, itching, & even swelling in my leg.
Each surgery takes a few months to fully recover, so back to skirts, carrying pillows, & depression. Yet I do not regret my decisions to have the surgeries. Anything I can do to fight this wretched disease is worth it. However I will be 80 in 2025, so my recent surgery may be my last.
At least I have educated literally 100s of individuals, including medical personnel, about Paget’s. I talk about it to anyone who will listen. Hopefully, with increased awareness, there will be increased research & help for future sufferers.
Replies to "Feb 7 2025 I haven’t checked in for awhile. I thought I had offered everything I..."
God bless you for posting. This is a wretched disease! I have only had one surgery and am now using Imiquimod. I am 74 and miserable. It is depressing
Such courage we all have!
I’m confused. Are some of the symptoms of EMPD itchy skin if so why is the treatment with something that causes itchiness & burning? I suffered with vulvar cancer stage 1B 2 years ago & went thru radiation/chemo. Had plenty of burning. Enough!
Is there a healthy option for us?? Any suggestions out there?
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?
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@chaka67 Thank you so much for coming back and providing us with your updates. I do hope that your seventh (that’s a lot of surgeries) in December, 2024 will be your last surgery and that you are recovering. Yes, you certainly have helped to bring awareness and education to many individuals during your journey with Paget’s. While I have not had this cancer you along with others here have educated me. Quite frankly, I don’t often post to this Discussion because you are all so supportive on one another and I don’t feel I can add to that. You are a compassionate group of women.