1. < Gynecologic Cancers

Has anyone had Paget's disease of the vulva?

Posted by chaka67 @chaka67, Apr 18, 2023

I am about to have my 6th vulva surgery for Paget's of the vulva in less than 10 years. That means for about a month after surgery I cannot drive, sit or walk, & I am the my husband's caregiver.
I also had a mastectomy 10 years ago, but was told they were unrelated. Also unrelated is any support for Paget's disease. They have marches for breast cancer. Yet I have never met someone with Paget's. Even this message box underlines the word Paget's as if I am misspelling the word!!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 25 8:44am
In reply to @ameliae "I hadn't heard of secondary Paget's til reading above. I wonder if that is what I..." + (show)
@ameliae

I hadn't heard of secondary Paget's til reading above. I wonder if that is what I have, as the gyno-oncologist said it seems to be related to having had breast cancer. And now metastatic breast cancer after 20 years. Secondary is non-invasive?? At any rate, he says mine isn't invasive or aggressive. So, no surgery or imiquimod. Thank God, as I have enough dealing with the cancer again.

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I'm glad that the article gave you more information about Paget's, @ameliae. Are you going to seek another opinion at a hospital in the U.S. or elsewhere?

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lrcg | @lrcg | Sep 27 8:18am
In reply to @bijou68 "Hello: May I suggest that you reach out to the Mayo Clinic in the US. I..." + (show)
@bijou68

Hello: May I suggest that you reach out to the Mayo Clinic in the US. I read that there are three locations. Perhaps Colleen can stir you in the right direction. Or the Cleveland Clinic as one of us suggested. I find you much too young to be dealing with this strange disease!!!! I am curious to find out from you and from all of you if any of you had Papilloma Virus? About 25 years ago or some three quarter of my cervix was contaminated by PV. The gynecologist had burnt the affected area and after numerous Pap Smears i was fine. Until manifestations on my vulva 3 years ago and that is when i receive the diagnosis of Paget's Disease of the Vulva. I am treated solely with Imiquimod which has also another name which escapes me at the moment: Aldara??? It is a cream. It has discomfort but it is getting easier... I was recommended to have the clitoris removed and i had scheduled the surgery when my oncologist informed that Imiquimod showed successes. So i tried. I was 65 when diagnosed. Even though no one seems to know exactly about the proper protocol (as not enough studies have been done so far), because the growing number of people affected, research will pick up some speed. As far as I know it is my only foyer of pre cancer or cancer manifestation. Cross fingers. Please do keep us updated. Prayers and happy thoughts

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I also have had success with Imiquimod / Aldara
First having excision without clear margins Pagets came back almost immediately
I changed Drs as the UW Dr said there was no other treatment than excision which was going to leave me mangled and completely disfigured. Found a new Dr at OHSU in Portland Oregon
Its a haul but closer than Minnesota or New York.
I have used Aldara for 3 months followed instructions to the letter
It had its moments I was afraid to think it could work.
Another spot developed during treatment. Its a head banger! Went for the checkup had 2 biopsies Dr didnt sound very optimistic we set up a phone appointment for 2 weeks.
I received a call from the Dr 5 days later that both biopsies were clear of Pagets!
It will likely come back but I would rather use the cream than have surgery or loose
my clitoris.
I am 60. Keep searching for the right Dr dont give up

LRCG

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