1. < Gynecologic Cancers

Rare Cancer: Gynecologic Extramammary Paget's Disease

Posted by moffitt @moffitt, Sep 15, 2022

Extra Mammary Paget’s Disease - invasive cancer.
No know treatment or clinical trials.
Very rare and rarely studied.
Anyone else have it?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

susanpagets | @susanpagets | Feb 7 9:40am
In reply to @sonyac518 "I have my follow up next week so until then I'm pretending I'm all good lol..." + (show)
@sonyac518

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 ❤️

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Thank you. This group is good for me. So many things I don't know

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chaka67 | @chaka67 | Feb 7 7:29pm
In reply to @susanpagets "Hello... I am coming in on February 6, 2025. Where do you stand at this point?..." + (show)
@susanpagets

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.

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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.

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2 replies
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 7 8:18pm
In reply to @chaka67 "Feb 7 2025 I haven’t checked in for awhile. I thought I had offered everything I..." + (show)
@chaka67

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.

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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.

REPLY
susanpagets | @susanpagets | Feb 8 1:27pm
In reply to @chaka67 "Feb 7 2025 I haven’t checked in for awhile. I thought I had offered everything I..." + (show)
@chaka67

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.

Jump to this post

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

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