I have not commented lately because I felt that I had offered all that I could about my Paget's journey, but my heart goes out to you with your bravery with dealing with this horrible disease with young children.
My only new offering at this time is that my Dr. is Namita Khanna at Emory in Atlanta. Her only offering has been surgery, but my research suggests that is the best bet for Paget's at this time. I called Mayo & discussed my situation with the kind person who answered & she agreed that Mayo had nothing more to offer, but of course I was welcome to come. Early on I went to 2 other gynecological oncologists with no other ideas. Dr. Khanna is professional & empathetic & most importantly, a good listener. I have had 6 surgeries with no invasions into lymph nodes so far. I go every 3 months. I would NOT go to a PA for this disease.
Last note: Emory is a teaching hospital & I see, in addition to Dr. Khanna, nurses, medical students, residents, those seeking fellowships, etc with each visit. Dr. Khanna & I agree that over the last 10 years I have helped to educate at least 100 medical personnel about Paget's.