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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oktave20 | @oktave20 | Mar 14 1:57am
In reply to @bouf1948 "@oktave20 did you find anything to help with the pain? Any kind of help would be..." + (show)
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@oktave20 did you find anything to help with the pain? Any kind of help would be appreciated- the dr told me we would use cream after surgery

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@bouf1948 when it became more pain and burning I took an ibeprofen and put some Greek yoghurt on the good skin in my vulva to ease the burning. Help for a while but not long enough. Nothing else used so I feel the pain from the cream is far less than what I have read about surgery.

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bouf1948 | @bouf1948 | Mar 13 2:20am
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 did you find anything to help with the pain? Any kind of help would be appreciated- the dr told me we would use cream after surgery

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1 reply
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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)
Profile picture for oktave20 @oktave20

@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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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 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 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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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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2 replies
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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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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 9 5:14pm
In reply to @oktave20 "@bouf1948 Hi there, I only found this site a week ago and see most of the..." + (show)
Profile picture for oktave20 @oktave20

@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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