So glad that you "found" me and others who have this bizarre & rare disease. Ten years ago I was desperate to find anyone who shared Paget's and could find no one. So I made decisions on my own using my research and "a wing & a prayer" , as they say.
You truly have been through a tough time. I know you are hurting physically & most likely emotionally. Please feel free to share with me/us any time about any feelings, thoughts, or anything you learn along the way whenever you choose.
I am so glad that you have a dr you trust. Initially that was part of my problem. I saw one dr, changed to a 2nd dr & had surgery with him, then changed to a third who has been professional, honest about my diagnosis (I think), and followed my lead in care. So important.
Take good care of yourself.

I was diagnosed with Paget's Disease of the Vulva on April 28th, almost by accident. I have had it for at least 7-8 years, followed by my GP. So few medical people know anything about it, including my GP. I was having a polyp removed in late March and a good friend (a pharmacist) suggested I ask the surgeon to biopsy my vulva. Alas! There it is. I've wrestled with it. had tests. Seen different docs and ended in the oncology/gynecology clinic with amazing women surgeons who work as a team. I've been on a roller coaster since April 28th, but now, after various tests, options presented, knowledge that margins are not clear and that it comes back in a very high percentage of cases, my age (almost 77), and I live alone - I have pretty well decided to live while I'm alive and not have the surgery. It has been slow growing. Maybe that will continue. Vaseline helps with the pain present in one spot more than others. I have an appointment with the cannabis clinic at the hospital to see how they can help with pain. I had a consult with a plastic surgeon who says he could do it --- huge areas of my thigh used ... however, he also suggested I might ask for surgery to remove the most painful areas. Next appointment with surgeon mid-October. I've done a lot of research to educate myself. It has been beyond stressful, as you know. May your healing come ... Troubling that so few medical people know about it. For that reason, I gave permission (it was mine to make)for the others the plastic surgeon brought in to see. Looking for other ways to share - and have done so with friends and on facebook ... would like to be able to do more at a hospital level or in other ways. I keep speaking of it there. Only two others have been treated for it at this hospital.