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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Thank you!
If you are interested in the “secret” facebook board for EMPD that is filled with info from those who deal with EMPD, visit the website, myempd.com
It gives you the info. You need to get to the facebook group. They were instrumental in my getting the appropriate care I needed for this disease.
So glad to hear you got an "all clear". Wonderful news. God bless and keep you.
Thank you for your reply. Your information is helpful. Hope everything is clear in June.
I had this scan Thursday. See my oncologist in two weeks for results. Waiting is hard, as we all know. This is my oncologist from almost 20 years ago when I had surgeries and treatments for breast cancer. The surgeon/oncologist for Paget's is at a different hospital. I haven't seen her in almost a year as I got thrown by a car, broke shoulder/humerus and more - so concentrating on healing - and relieved in a way not to have to make a decision and tell the surgeon again I don't want surgery. But will someone follow me ... in that case.
@victoria15 This is wonderful news. Congratulations! 👏👏🎶
I had a CT scan on my chest, abdomen, and pelvis. All clear.
Hi there!
I am 72. I had MOH’s done, and it was done just as it was on my face. I had 4 passes before I got clear margins. They used local, and it was not bad to me. I would say though the initial needle numbing sticks were the worst part. If you go to the myempd facebook group, and read their stories, you will find all different responses.
I go to see my doctor June 13, and I sure do hope it is still gone.
New here. May I ask what CATS refers to?
May I ask what is your age? I'm newly dx, 84 years old, and facing these decisions. When you had Moh's surgery (I am familiar with the procedure) did they keep you anesthetized the whole time they did four stages? Or is this done with local anesthesia? My husband had MOHS on his forehead but that was a little different situation.
Very new to this group. I am interested to hear about your protocol.
I'm thankful for your biopsy protocol after having just one! They are brutal. How long does this relief last. I had painful symptoms for over a week.
Thank you so much for helping us newbies.