I have Extramammary Perianal Pagets Disease

[libby]

Hello everyone and my thoughts are with you all.

I was diagnosed with EPPD last year and have had two surgeries to remove what they could see around my anus ... the recovery was pretty nasty,the last surgery. Plastics did a flap repair but on each occasion the stitches didn't hold together (probably 30 in total)...both pathology results stated that the disease was outside the margins of what was cut out.

The surgeons and Oncologists don't seem to know what to do with me as they haven't dealt or seen this before and say I am one in a million it's so rare. They are having another hospital meeting this week but I am starting to get concerned as to my future treatment and outcome. Has anyone else had EPPD.

Thank you and take care

[Tedware]

Hi Libby,

My wife was diagnosed with EMPD around the vulvar, treated with extensive surgical excision and a lotus petal flap repair just over two years ago.  Her margins were clear and so far there has been no recurrence.  I have read as much as I can find about this condition and it seems to present health professionals with considerable challenges.  Especially with determining the margins for surgery. The literature on recurrence rates is all over place, ranges from 30 to 50 percent.  

I am assuming that EPPD is the same condition as my wife just in a different position. These are rare skin conditions and to my knowledge the Lifehouse in Sydney has the most experience in treating them.

Your post was back in August so my guess is you have had further treatment.  I hope this has been successful and you are more comfortable.  Life takes some strange directions and this is one we could never anticipate or prepare for.

Take care

[Shelleyt24]

I have just been diagnosed and see oncologist thursday. I'm nervous. I feel better knowing there are other "one in million" women out there.