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Has anyone had Paget's disease of the vulva?
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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I have not used the cream. I was told it was just for areas that they couldn’t do surgery on. If you trust your dr he would know but if you’re concerned a 2nd opinion may make you feel better. I have had 4 surgeries, 1 about 5 yrs ago and then in the last two years I have had 3 more. The Pagets was behind my clitoris and kept coming back. I elected to have my clitoris removed with this last surgery cause I was tired of surgeries every 8 months. It does come back and my dr told me it will always come back. Hopefully this last surgery will last longer. I took the medicines they prescribed for the first three days then tapered off. I also made meals for the freezer that I could just heat up. Unless you have someone to cook for you!
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2 Reactions@bouf1948
@foster14 hi, my name is Carole Ann. I’ve just been diagnosed, although, I’ve had this two years. They want to do surgery in two weeks. Do you recommend a second opinion? Are you using that cream I read about? Does it always come back?
@ichinnaya did you have surgery? I’ve just been diagnosed
Hello. My name is Carole Ann, and I was diagnosed a week ago. The dr wants me to have surgery. I’ve had a sore for two years that doctors (mainly one) have been treating with various creams, and I just now had a biopsy. I thought it was from my underwear rubbing against my private parts, but it wouldn’t go away. How do they know if it’s spread? Do they do Mohs type surgery? I am single, and I live alone. I don’t know how I could not walk, drive, etc. for a month. Do they ever do that special cream you talked about alone, or is it always in connection with surgery? Thank you for any tips you can give me.
@ameliae The invasive the pagets is the longer it will take to heal. My 1st surgery the pagets was caught early and it only took a few weeks to recover. My 2nd surgery it took much longer.
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1 ReactionI appreciate you checking up on me! Recovery is doing okay. I have a post op appointment next Tuesday. I'm hoping that this will help keep the pagets at bay for a while longer then 8-10 months. I've been walking around the house as much as I can. This may be the second reply, I didn't seen the first one so I replied again!
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1 Reaction@foster14, I thought I'd check in. I hope recovery is going as well as can be expected. I look forward to hearing an update when you feel up to it. For now, I wanted you to know I'm thinking of you.
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1 Reaction@ameliae
I am going in Wednesday for my 4th pagets of the vulva surgery, this time they will be taking the clitoris out also since the pagets is behind it. They have tried to go around it but it seems like its stemming for around there and I'm damned tired of this every 10 months surgery and being in pain the rest of the time. It took me several weeks before I felt comfortable with driving. I did walk as much as I could though
@kanderstag
Thank you for letting me know! I have been dreading this!