Squamous Papillomatosis

breed10

My right nipple has been "different" for quite some time. In 2013 I went for my first ever mammogram. I had asked my GYN about it at my yearly (first one in too many years). She said we would see if the mammo showed anything an go from there. I was having serious uterine issues so when the mammo came back clean, I did not question it anymore. Towards the end of April this year, I noticed that my nipple was redder and very itchy and sensitive. I also notice a bloody discharge. It was not a bright red discharge, but like it had a straw color type mixed in with the blood. It was not a lot, and not from the tip of my nipple. I have a "growth" that has kind of take over and it was oozing from the bottom and top of this lesion. I read up on it to determine if I should return to my GYN or go to a dermatologist. I don't really have a pcp. I call a local dermatologist and they felt I should return to by gyn. She checked me and set up for a diagnostic mammo and ultrasound. She put me on an antibiotic to see if any of the inflammation/itchiness would go away. The mammo was good. The ultrasound showed something behind the nipple, but the dr who discussed it with me did not seem too concerned. He said it did not appear to be a mass, was probably a blocked milk duct. When I asked if the thickening of my nipple showed anything he was puzzled. When he looked at it, he told me that I would need to follow up with my gyn. At the follow up appointment (now 4 weeks later), she suggested I see a breast specialist concerning possible Paget's Disease.

I made an appt with a specialist/surgeon and went on Monday of this week. He said it was different and there was definitely something going on. He felt a lump behind the nipple. He did a nipple biopsy and I got the results (over the phone) yesterday. He said it is Squamous Papillomatosis. I asked if this totally ruled out Paget's and he said he was now "less concerned about Paget's". When I asked about the lump, he said it was probably just from the papillomas. He says that I will need to come back in and discuss surgery for the removal of the papillomas. The surgery will be the removal of my right nipple for sure and also the removal of the duct behind the nipple.

I know that I should be overjoyed because it is benign, but I feel burdened with more questions. I want to KNOW that Paget's is ruled out altogether. Some of my family thinks I should have the surgery and move on, some think I should get a second opinion. I am so confused and mentally exhausted. I have read so many times on these blogs of misdiagnosis with Paget's. I am also concerned that surgery might be the norm, but is it necessary? I just want it all to go away.

Anyone else have this diagnosis/issues?