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 think I even put my reply in the wrong place. Sorry.