Paget\'s disease

Since coming on this site, I have read of several people who's cancer presented as Paget's disease. I thought that it was relatively rare, at only 1-2% of diagnosed bc patients.

Now I am wondering if it appears more often in HER2+ patients. I also presented with pagets disease.

The only reason I found out about it was due to an email that chain-emailed around the world describing the symptoms. It probably saved my life as I had neither breast lumps nor a positive mastectomy scan. Even my breast specialist thought it unlikely that I had pagets (however biopsy proved her wrong).

Who else here presented with pagets?

What were your symtoms? What prompted them to do a biopsy? I think I may had this but no one connected my symtoms with this at that time. Hugs, Sandy

A cross-link re Paget's disease.

My breast cancer also presented as Paget's Disease. Despite a negative mammogram and sonogram, my breast surgeon recommended a biopsy because my nipple was slightly flattened (no redness, itchiness or discharge). I wasn't too concerned because I thought it could just be the aging process. Eventually I was diagnosed at Stage 2B. Since then, I've been on the bandwagon for women (and men) not to just look for lumps, but to pay attention to ANY change in the nipple. I'm glad you brought up this forum.

I had thickening of the nipple and areola which I associated with aging. I had a slight amount of itchiness. I also had very faint white pimple-like spots under the skin which I only noticed after I read descriptions of Paget's disease and they mentioned them as a symptom and I went looking for them.

When I went for a mamogram (after I raised the red flag) the pressure of the mamogram plates expressed some brown fluid from my nipple which I had never seen before.

I, too, presented with Paget's, and had three different doctors (dermatologist and gynecologist)give me three different "creams" to treat it. Finally, a biopsy last Nov., '03 was done and Paget's was confirmed. I also saw the e-mail "warning" and even showed it to the radiologist at my mammograms in 2002 and 2003, both of which were negative. Perhaps there is a link with her2.

I wonder how many people that that email saved?

I have wanted to thank the originator of that email, but of course she was long gone from the "forwards" before I got it.

I know that one of the sites I checked for Paget's mentioned it as having generated a huge amount of interest.