Has anyone had Paget's disease of the vulva?

I am soo saddened to learn of your plight!! I have had surgery for ca of the vulva but never had any problems with Padgets (?I only had to have one surgery and the cancer was eliminated. Very specific margins and a very renowned doc who did surgery. I did have to have 7 inguinal lymph nodes removed which showed no involvement!
I certainly hope that there is some help for you and that this whole nightmare will end for you.

Your experience was not an easy one, either. Glad it seems to be resolved & hope it continues that way.
Paget's is a rare, puzzling disease. I compare it to planting bamboo; it keeps turning up no matter how many times you try to destroy it. So far no one seems to know why it occurs, thus no one knows how to stop it. Basically it is a skin cancer of the vulva & the obvious danger is that it will become invasive & spread. So far mine has not and it has been nearly 10 years of surgeries & monitoring. My oncologist is also excellent, but through my own research, I know we are no more ahead in understanding this disease than 10 years ago. As someone said to me a while back, "there's no money in research for Paget's". Not enough folks affected. I called Mayo Clinic a while back because they are doing a clinical trial on Paget's , but the kind woman who spoke to me assured me that they have nothing new to offer than what we are doing here. So... it is a waiting game even after 6 surgeries. Good luck to you & thanks for your empathy.

I wish I had a five year old grandchild. I got the first part of the instructions for PM's you ... but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center.

I wish I had a five year old grandchild. I got the first part of the instructions for PM's you … but couldn't find a 'pen' an place to go for the second step. Nor (given my anxiety level) am I remembering how to get to the help center. I think I even put my reply in the wrong place. Sorry.

No pen that I can see.
Frustrating as I haven't found anyone or anywhere else that this is discussed and that someone understands.

Click on the little envelope & then look for word "compose". It has a little pen on it, but just use the word compose.
I understand your frustration. When is your surgery scheduled? I am online now so I can answer your questions.

There is no word compose. I'm so frustrated

Hi Ameliae,
There is a brief period where new members cannot initiate a private message conversation. We do this to deter spammers and keep the community safe. You will be able to send a private message in a few days. You can however receive and reply to private messages sent to you by established members like @chaka67

Naturally the value in an online community are the open discussions because they not only help the people actively participating in them, but also the people reading them and learning from them. I hope you'll both continue to share your journey here.

Thank you. My surgery is next week. I hope it won't be too long before I can do pm's. I will also share online in general, but I really need to just talk to someone outside this. So I hope chaka67 will message me.

I will message you tomorrow morning. I did not realize that you were unable to initiate a pm.
I know your anxiety is sky high, but hopefully you will benefit from knowing I have recovered 6 times & continue to live a busy life, fairly normally enjoying friends & family & happy times.