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Rare Cancer: Gynecologic Extramammary Paget's Disease
Gynecologic Cancers | Last Active: Feb 8 1:27pm | Replies (84)Comment receiving replies
Hello...
I am coming in on February 6, 2025. Where do you stand at this point? I had
surgery approximately two to three years ago and the Paget's is back. The
Oncologist has now recommended the Imiquimod. I have Paget's in more than
one place. We are starting with the uppermost spot and if it works, we will be
moving down to the next spot. I really need information on how this worked
for other women.
Thank you and would appreciate hearing back as soon as possible.
Replies to "Hello... I am coming in on February 6, 2025. Where do you stand at this point?..."
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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.