Rare Cancer: Gynecologic Extramammary Paget's Disease

I have my follow up next week so until then I'm pretending I'm all good lol I'm sorry you're going through this it's amazing to me that so much is still unknown. Sending lots of prayers ❤️

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.

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.

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.

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.

I hear you, and wish there was a painless medication-free treatment, but we don’t seem to have one yet. Imiquimod (Aldara) works by irritating the tissue, thereby stimulating the body’s immune system to attack and kill the cancer cells. Think of the old exercise adage, “No pain, no gain.” My first time using imiquimod was tough—I only got through 6 of the prescribed 12-week treatment because the rawness became unbearable. Still, the lesions did shrink. The second time I used it, I was able to tolerate it much better. I applied the cream with a Q-Tip to keep the treated area as small as possible. Also, applying lidocaine cream 30 minutes prior to the imiquimod eased the discomfort enough to allow me to go to sleep. Some women say they take a week or two off to let the skin heal a bit, then resume treatment. I know how frustrated you are to be facing this, and I hope it is a tolerable option for you.