Has anyone had Paget's disease of the vulva?

Thank you so much for the kind and encouraging words. Yes, so with Swedish Hospital when the scheduler called I let her know what had happened at UW and asked if any of her Docs knew more about Pagets than another. I also told her I wasnt in a huge hurry. That February or March would be great. Her reply was wonderful. She said that she would send out a message to the whole team to see who felt the most confident in seeing me. I was grateful to get such a nice person at the scheduling step of the process.

@lrcg I wish I had the PA you saw right in front of me so I could say - "Just tell me you what you know and don't know. And if you don't know the answers to my questions, who can you ask?". I can understand why you felt so alone in that appointment. It's great that you will get another opinion at Swedish Hospital.

We have to advocate for ourselves and that's just what you did. Medical appointments and some medical providers are so intimidating. You are seeking speciality care and I hope you find compassion and better communication at Swedish Hospital.

Do you know when your appointment at Swedish Hospital will be?

It’s good you are getting that second opinion. I am glad you didn’t let someone intimidate you into believing their opinion is the only one.
Take care.

Thank you I will follow up. My appointment went okay. No new Pagets yet.... But my questions were unanswerable because the UW doesn't seem to know anything. I asked about treatments or hospitals or such that are studying Pagets and the PA just looked at the ceiling I told her I feel so alone. She lost it and said "do you want a second option"? I said yes so now I am going to head to Swedish Hospital. Next will be Mayo.
I am also seeing an ND that is helping with general cancer treatments with supplement's and dietary things. It has been helpful and hopefully is why I haven't had a reoccurrence. It is better than waiting for it to come back.

Welcome, @lrcg. If getting a second opinion at Mayo Clinic is an option for you, here is the link to get started: http://mayocl.in/1mtmR63

How was your checkup? What did you learn?

Is it possible for you to see a gynecologic oncologist? Get a referral from your current gynecologist? My regular gynecologist did the initial biopsy. When it came back as Paget’s, he referred me.
There is no harm in seeking a second opinion.

I had surgery last December 22,2022 for Pagets of the vulva. I believe I have probably had it for 5-7 years prior and didn't know it and my Gyn didn't catch it. I had an itchy spot but it was intermittent then Covid happened and my Gyn retired and I was at a loss for where to go. Finally found a new Gyn and remembered to tell her about the itch. After a biopsy it was confirmed. That's when the whirlwind started. I have had one check up in June 2023 and go tomorrow for my second check up. I am pretty sure I have it in another area but really don't want another surgery it was awful. I am thinking of a second opinion or the cream, I am open to anyone's thoughts I have felt so alone. I will post about my appointment but I think I have lost confidence in the current Dr.

Thank you! Your comment gives me hope.
Good luck to you as well.

So glad to hear the positive outcome. I hope you have many years to enjoy life before you need further treatment. I believe the 3 month monitoring is the norm & will help you to "catch" any further developments while you still can control the progress of Paget's.
As I have reported, I have had 6 surgeries, and as miserable as it is to have the surgery, I have survived 10 years thanks to this early detection & prevention.
Good luck

Good news, bad news from my oncologist. The lymph nodes that were removed showed cancer but only at the microscopic level. All the margins tested negative so by doing a radical vulvectomy they removed all the cancer cells in/on the vulva. Due to these findings, I will not have to have radiation at this time. Yay! However, it could reappear in the future. The doctor said I will have to be monitored every three months going forward.

The healing is going well. Still having some pain/discomfort when sitting for a while. Still am not able to lift over 5 pounds or do any strenuous activities. Trying to get my energy level back up to where it was. Finding I need a nap every day now.

I have an appointment in December for a follow up with the oncologist.

Hope you ladies are doing well.