1. < Gynecologic Cancers
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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!!

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

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bouf1948 | @bouf1948 | Mar 8 9:48pm
In reply to @oktave20 "@bouf1948 The doctor did say that I should do the surgery then the cream because she..." + (show)
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@bouf1948 The doctor did say that I should do the surgery then the cream because she said the cream was so painful. I gave myself 14 days to think about this and decided that if the cream was unbearable I could stop it but surgery was a permanent decision to make.
I don't regret my decision so far, and the pain did get intense but I just took a week off and started again. The burning comes from the good skin as Aldara burns it, so try to put the cream only on the affected area and not too thick. No painkillers taken during the time on Aldara.
Reading some of the notes here I would say the surgery would be worse than the cream.
Hope the pain eases for you soon.

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@oktave20 I think you were very smart to try the cream first since doctors really know so little about it.

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oktave20 | @oktave20 | Mar 9 6:47am
In reply to @bouf1948 "@oktave20 were you able to sit and get up and function using the cream?" + (show)
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@oktave20 were you able to sit and get up and function using the cream?

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@bouf1948 Yes I was able to everything that I had previously done, just sometimes irritable in myself. No one around noticed any different.

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bouf1948 | @bouf1948 | Mar 9 5:14pm
In reply to @oktave20 "@bouf1948 Hi there, I only found this site a week ago and see most of the..." + (show)
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@bouf1948 Hi there, I only found this site a week ago and see most of the women have had surgery without doing the cream first. I live in Australia and was diagnosed with Pagets last August but decided to do the cream first. I am clear as of two months ago. I did 7 weeks (3 nights, Monday, Tuesday and Friday) with the cream then stopped for 1 week did another 3 weeks then again stopped for a week then 10 days and now 2 months clear.
Fingers crossed it doesn't return any time soon.
If you decide to use the cream make sure it is only a thin layer of cream.

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@oktave20 were you able to sit, drive, get up out of a chair? How would you rate the pain level. I think I will opt for cream next time. This is unbearable.

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bouf1948 | @bouf1948 | Mar 10 2:01pm
In reply to @bouf1948 "@oktave20 were you able to sit, drive, get up out of a chair? How would you..." + (show)
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@oktave20 were you able to sit, drive, get up out of a chair? How would you rate the pain level. I think I will opt for cream next time. This is unbearable.

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@bouf1948 no, none of the above, without excruciating pain. They only gave me 6 oxycodone when I left the hospital, and they made me buy Narcan. The nurse said you can’t even overdose on 6 five milligram oxycodone. The most excruciating pain I’ve ever had and I’ve had two children.

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bouf1948 | @bouf1948 | Mar 10 2:10pm
In reply to @bouf1948 "@oktave20 were you able to sit, drive, get up out of a chair? How would you..." + (show)
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@oktave20 were you able to sit, drive, get up out of a chair? How would you rate the pain level. I think I will opt for cream next time. This is unbearable.

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@bouf1948 I forgot to rate the pain level - a 10

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oktave20 | @oktave20 | Mar 10 10:17pm
In reply to @bouf1948 "@oktave20 were you able to sit, drive, get up out of a chair? How would you..." + (show)
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@oktave20 were you able to sit, drive, get up out of a chair? How would you rate the pain level. I think I will opt for cream next time. This is unbearable.

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@bouf1948 no painkillers require when using cream.
I would rate it a 6 or 7 out of 10 depending on how large the area being treated.

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oktave20 | @oktave20 | Mar 10 10:21pm
In reply to @oktave20 "@bouf1948 no painkillers require when using cream. I would rate it a 6 or 7 out..." + (show)
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@bouf1948 no painkillers require when using cream.
I would rate it a 6 or 7 out of 10 depending on how large the area being treated.

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@oktave20 I was able to do normal day to day chores with a few more rest periods in between

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bouf1948 | @bouf1948 | Mar 11 12:27am
In reply to @oktave20 "@bouf1948 no painkillers require when using cream. I would rate it a 6 or 7 out..." + (show)
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@bouf1948 no painkillers require when using cream.
I would rate it a 6 or 7 out of 10 depending on how large the area being treated.

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@oktave20 you could sit, get up from a chair or bed, drive?

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oktave20 | @oktave20 | Mar 11 5:00pm
In reply to @bouf1948 "@oktave20 you could sit, get up from a chair or bed, drive?" + (show)
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@oktave20 you could sit, get up from a chair or bed, drive?

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@bouf1948 Yes, I was able to continue as normal. Some days I didn’t want to do these things but if I had to go and get groceries I could. I even looked after my grandchild one day a week with my husbands help. At present it has cleared but if I see signs of a return I will use the cream again. I’m a little worried that there may be a primary somewhere else in my body. I have had a PET scan only, but would like an MRI on my organs just to stop the doubt. Would love to know what pre-op checks anyone has had.

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3 replies
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bouf1948 | @bouf1948 | Mar 11 7:27pm
In reply to @oktave20 "@bouf1948 Yes, I was able to continue as normal. Some days I didn’t want to do..." + (show)
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@bouf1948 Yes, I was able to continue as normal. Some days I didn’t want to do these things but if I had to go and get groceries I could. I even looked after my grandchild one day a week with my husbands help. At present it has cleared but if I see signs of a return I will use the cream again. I’m a little worried that there may be a primary somewhere else in my body. I have had a PET scan only, but would like an MRI on my organs just to stop the doubt. Would love to know what pre-op checks anyone has had.

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@oktave20 I’d had a mammogram last fall, so they said I didn’t need another one. It was good. I had a colonoscopy 3 years ago, and they said that should be good. My liver enzymes are good. I think they may want to check my bladder. I have had leukemia and lymphoma for 5 years, and I’m receiving IVIG infusions for my immune system every four weeks. I go back March 24th, and, hopefully, I’ll find out more.

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