Extra mammary Paget's disease

Thanks sharing all your sentiments together we will feel stronger so glad I found this site x

Hi platespinner.

I have just been diagnosed with pagets disease of the vulva. 

I am so scared and feel lonley as its so rare no one seems to know how to treat it or what to do.

I have been referred to a specialist unit near me but weeks seem to pass since my biopsy and no ones in any great hurry to help.

Its good to know I'm not alone with this

Just wish the was more  info on what happens.

Thanks for listening hope you well

Take care 

Mary-S, I'm so sorry you feel so alone. I've heard others talk about this disease but I am still so confused as to what the symptoms are and how this is diagnosed? I looked up some information and there are a lot of different Paget's diseases and it said it is rare to be combined with VIN 3 but not unheard of. Then that it goes deeper than epidermal and the lesions are actually tumors that can affect the vulva, urethra and bladder. Does this sound like what you've been told? Did they diagnose this with a biopsy? I am so curious about the differences of VIN and Vulvar Cancer vs Paget's disease and or extra mammary paget's disease.

Thank you,

Lisa