Laurie,
My Paget's was not initially identified by the general surgeon who did the 
needle biopsy of the "lumps* in my breast...(the lumps were of greater concern 
than the crusting/inflammation of the nipple).

It is now my opinion that I made a mistake by going to a general surgeon to 
do the intial needle biopsy instead of a BREAST surgeon.  The difference 
between a "jack of all trades-general" surgeon and a "JUST" breast surgeon, is that 
the latter would have mapped out the biopsy better for the surgery that had to 
happen later on. 

 I went to this general surgeon after complaining to my OB/GYN for over a 
year about pain in my breast and the nipple infection.  Finally the OB/GYN said, 
"I'm sure its nothing, but if you want to , go see Dr. XXX."
Just to insert a point here...this is the same OB/GYN who did not think to 
have me get a mammo/sono or breast MRI postpartum either.  I never pushed the 
point, I assumed back then that  I couldn't get a mammo if I was nursing.

If you look up the definition of Paget's of the Nipple, it is described as 
rare, so I'm not certain that most doctors have actually seen it or would 
recognize it.  One breast surgeon I interviewed for the mastectomy said that a 
biopsy could be performed just on the nipple to check if it was paget's, but since 
there were underlaying tumors that needed to come out, it made sense to 
confirm its existence after the mastectomy.

Here in NYC, there are a number of breast surgeons...affiliated with such 
hospitals like
 New York Cornell/Presbyterian, Memorial Sloan Kettering, Columbia 
Presbyterian, NYU, that have their own breast cancer centers.  A center would include 
the breast surgeon, plastic surgeons for reconstruction, the facilities for the 
numerous screens and blood tests, echos, and EKG's, the oncologist, 
radiologist, and radiaiton facilities and also those really fun chemotherapy places. 
In my situation, all of those steps were done in one building outside of the 
hospital, with the exception of the big surgeries and the radiation therapy.

Women who find themselves traveling down this road are best armed by 
gathering feedback from other cancer patients as to which facilities do the best 
soup-to-nuts (otherwise the doctors from the various specialities may not 
communicate and work well together on her case).

Melissa,....one note to throw in here...
I suffered from so many plugged ducts with my first daughter that I called 
myself the Queen.  I have wondered about the connection to those plugs and the 
breast cancer.  There are so many wonderful studies that could be conducted 
that could reveal much.

Best, Felina

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