A mom in my area has been diagnosed with DCIS (ductal carcinoma in situ) 
that may or may not be secondary to Paget's disease.  She is currently 
bf her 1 year old (and bf her 6 yo for 3 years).  For most of the past 
year she has had a raw peeling nipple, and pain in the breast.  She gave 
up bf on that breast at least 8 months ago, and consulted several 
doctors and was treated for infections and mastalgia.  Continued pain 
and a large lump brought her back to the doctor, and a fine needle 
aspiration was done of a 4-5cm tumor.  The FNA biopsy came back 
adenocarcinoma.  Next an incisional biopsy was done, and the results 
were DCIS, preinvasive, moderate grade.  The doctor who did the biopsies 
recommends a mastectomy, because she feels that the tumor started from 
Paget's disease of the nipple.  (Receptor tests and BRCA gene tests have 
not come back yet).

No one seems interested in biopsying the nipple to see if the whole 
breast really does need to come off, or if lumpectomy and radiation 
would be enough.  She's also concerned about estrogen suppression 
therapy if the tumor turns out to be estrogen receptor positive, and 
would love to be able to continue breastfeeding.  Obviously her primary 
goal is to live to care for her small children, but she would like to 
preserve breastfeeding in the contralateral breast and be recovering 
from surgery for as little time as possible, hence the appeal of the 
more limited operation.

Any words of wisdom, or experience with Paget's disease or DCIS in 
lactating women?
Thanks.
Catherine Watson Genna, IBCLC  NYC

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