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Has anyone had Paget's disease of the vulva?
Gynecologic Cancers | Last Active: Sep 27 8:18am | Replies (142)Comment receiving replies
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.
Replies to "Thank you I will follow up. My appointment went okay. No new Pagets yet.... But my..."
@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?
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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.