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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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@bouf1948 Question is: for the doc - is the Pagets estrogen mediated? It can mean the difference between huge surgery and not.
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1 Reaction@foster14 the first doctor recommended surgery, followed up with cream. She said she had experience with this, but I don’t believe her. She’s very young and she told me twice it wasn’t cancer before the biopsy. I’m seeing a doctor Tuesday who does have experience. I got his name off of the Mayo Clinic list. I’m somewhat concerned about not being able to walk or drive after surgery. I don’t have someone to cook for me, so I will fill up my fridge or order meals online. I guess I’ll clean my house really good before surgery. The area involved is next to or on the labia, and it hurts sometimes a lot. It’s better when I try to keep it dry instead of using creams, like other doctors have prescribed. Hopefully, the dr Tuesday can tell if it’s invasive. I don’t know how they do that.
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2 ReactionsI’m very sorry you have to go through all of this - it’s almost more than a person can take. I also have other autoimmune diseases, like a rare eye disease that nobody is researching - I guess because there’s no money in it. Do you use the cream in addition to the surgeries?
@ameliae I go to the doctor Tuesday - he only sees patients Tuesdays. He has experience with Paget’s - he was listed as distinguished on Mayo Clinic’s list of doctors. I’m praying I can use the cream only. I’ve been using all kinds of creams, like steroid creams, diaper rash creams, Vaseline, but none of them worked. If I do nothing, it’s better. I’m glad the cream worked for you!
@foster14 did you can control your Paget’s with cream? Does it burn really badly? How long have you had Paget’s?
@bouf1948
My dr said it will almost always come back. He is the top doctor in the PNW and has written books and trained others. Pagets is such a rare disease. My primary care dr didn’t even know what it was. mine was made worse by my incontince. It just burned. I’m hoping that it doesn’t come back for awhile. My dr just retired and supposedly they have found a replacement for him but she isn’t as familiar with Pagets. So this could be interesting. Good luck with your surgery! Cold packs on the area help after surgery.
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3 Reactions@bouf1948 Hello, Carole Ann and welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. It looks like you've already received some good information from @foster14 and @ameliae. You've come to a good place to read about the experiences of others and to get support. You likely noticed that this particular discussion is quite long as it's an ongoing and active discussion with information from others including their own experiences.
It's good that a biopsy was done and so now you have better idea of what's happening. Do you know what your physician plans for the surgery they recommend? Some of the questions you've asked could be answered in a consulting appointment with your doctor. Also, if you are on the fence about surgery or type of surgery have you thought about getting another opinion from a different doctor? Getting another opinion is very common and many of us have done just that.
What other questions do you have?
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3 Reactions@bouf1948 It would be good if they could check if it is invasive or not. Mine, it turns out, is among the 12% non-invasive. I use prescribed (in Canada) cream. I also refused massive surgery (fortunately) because I was diagnosed with metastatic breast cancer not long after 8 + years with what was finally biopsied and diagnosed as Paget's. Curious - the anti-estrogen meds have decreased Paget's symptoms as mine is estrogen-mediated and the surgery would have been, for me, a huge mistake. I'm wondering if docs test for the estrogen link.... before some surgeries. Praying for you.
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1 Reaction@foster14 I live alone, so I think I’ll have some food handy or order in. I think I’ve about decided I don’t need a second opinion. I don’t find varied information on the treatment - just surgery beyond the margins and cream. Does it always come back for everyone? It must’ve been a very painful surgery for you - I’m very sorry. Will it still come back after your big surgery? What kind of doctor did your surgery? Will I be able to sit or walk or drive? They don’t know what causes it, do they?
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1 ReactionPlease reach out if you have questions that I can help you with! Good luck!