Waiting for results, possible Paget's or..?

NZee08

Hello, hope all are doing well, considering! Advance warning, I'm wordy, sorry.

As the subject line says, I am waiting for biopsy confirmation of Paget's disease. Background: I'm 31F, breastfed for a little over a year, have a family history of early-onset aggressive breast cancer, and have been on hormone therapy for suppression of endometriosis off and on for the past decade or so.

To make a long story not much shorter, around eight weeks ago I noticed some skin on my left breast seemed thicker than before and the pores were more visible, but it was so subtle I honestly thought I was making it up (even though I could see it, don't ask). Within four weeks (about a month later/a month ago) the affected area had gotten a bit bigger and I noticed some itchy/pins-and-needles sensations in my breast and nipple, but no rash or swelling although it did feel "heavier" and I sometimes get a hot/cold feeling. I started keeping an eye on things but didn't worry too much because still no lump and, well, COVID. Two weeks later, (6 weeks in/2 weeks ago) the thick-skin area had grown again to include about half my areola, would dimple/pucker if I touched it, and my entire breast was tender and itchy/pins-and-needles tingly. I also had some mild discoloration just above/to the right of the thickened skin that looks almost like a shadow (not red or purple, just different) and hasn't obviously changed shape/size since. Over the next few days I noticed the thick-skin area continue to grow so that it eventually surrounded my nipple and caused noticeable discoloration in the areola/nipple area, and the dimpling/puckering became spontaneous (without touching it) and now happens every time I raise my arm or move my breast. When I noticed nipple retraction and a small amount of sticky (TMI?) discharge about a week ago, combined with all the other symptoms and the rate of change, I finally called it in.

My physician saw me the next day, did a quick exam, and sent me for my first-ever mammogram yesterday. The tech did the scan and recommended an u/s as well; they took note of the obvious skin issues but said my scans were perfect besides the mysterious thickening and that my doctor would be in touch. No more than 30 minutes later my physician called me (on her day off) and told me my report listed a bi-rads score of "high 4." She was referring me to her "favorite" breast surgeon for an exam and skin punch biopsy with a suspected diagnosis of Paget's disease of the breast. My physician and surgeon (haven't had the appointment yet, just a quick phone call to assure me they are trying to get me in ASAP) are both highly suspicious of Paget's disease even though my symptoms presented a bit out of order, and have mentioned "something else" that they won't worry about right now. Of course I'm worrying about all of it, but they've been very kind and responsive so I'm trying to be patient.

I know only the breast surgeon and pathologist can diagnose me, and I don't need medical advice since I don't have a diagnosis to be advised on. I guess I'm just trying to make sense of it so far, and hoping someone might see something familiar in my story and be open to sharing what their diagnosis was or how they're holding up in general. Any advice for the biopsy, what to expect, what happens if it's positive, etc? I am also very open to anecdotal evidence that I do not have cancer if you've got it!

Thanks for reading, take care!

Moderators

Dear NZee08,

Welcome to the BCO community. We are sorry that these breast changes have brought you here but glad that you reached out with your thoughtful questions. We are hoping that some of our members will come along to offer you some support. In the meantime you may want to check out this page with links to Common questions and concerns for those who are not diagnosed but waiting on tests, etc. Keep us posted on how things go. Let us know if we can be a help to you as you navigate your way around the boards.

The Mods

NZee08

Update for anyone who might come across this thread with similar symptoms:

I had a skin punch biopsy done yesterday, and it was "exciting" per the surgeon's words. The surgeon reviewed my u/s that showed skin thickening, observed discoloration and other skin changes, and agreed a biopsy was needed although he made a point to comment on the subtlety of my symptoms and seemed puzzled. During the biopsy I bled more than was expected and heard something about increased vascularity that didn't show on the u/s; the surgeon seemed quite surprised and kept asking if I was sure I didn't have a bleeding disorder, and the nurse said it looked more like a vaginal delivery room than a biopsy room. Thanks?? I looked up "increased vascularity" when I got home and wasn't too happy, but there was nothing left to do but wait for the results.

Ultimately, the biopsy came back benign which is a relief! I still don't have any answers for my symptoms although it was said that perhaps they are unrelated and just coincidental (?) and will be following up with both the surgeon and my physician to see what happens next. If I get any more information I will post it for those who are curious.

Thank you for letting me share and good luck!

Carly613

Hi. That’s great your biopsy came back benign. I just had an ultrasound today and it showed thickening and I have to see a breast surgeon. I have discoloration (pink sometimes purple, I’m very fair skinned) and peau d’orange. Both are very mild, the radiologist and ultrasound tech could barely see it. Did you ever figure out what it might be causing your symptoms? I’m trying to stay positive but when I google skin thickening, peau d’orange etc there aren’t many things other than IBC ( yes I know I shouldn’t google but I can’t help it)

MinusTwo

Carly - Really - don't google. You'll drive yourself around the bend. Waiting is hard but try to quit looking and find something to totally occupy your time.

NZee08

Carly613,

Google is a double-edged sword, for sure! For me, having all the info and being able to prepare in advance for different outcomes helps me cope but if it's stressing you out, as hard as it is, just put the phone/computer down! It didn't work for me, but it really is good advice if you need it.

Unfortunately, after working with the pathologist, radiologist, and other surgeons, and discussing my case with the entire office staff (he asked if my ears had been burning they were taking about me so much), my surgeon was not able to determine a cause for any of my symptoms. The biopsy itself wasn't difficult, although looking back the thickened area did take longer to go completely numb; if I have to do it again I'll ask to wait an extra minute before cutting. I healed quite well, no complications, and the scar is tiny!

The tissue tested as benign, slightly atypical but not pathological so no treatments needed. He told me to keep an eye on it and call if things get worse before my fall follow-up; I'll probably be getting yearly mammograms and u/s to monitor the area. While it feels a bit like it's only a matter of time, as of right now I'm healthy and working on taking care of myself in other ways.

Good luck, and don't forget to breathe!

Carly613

NZee08,

Thanks for your response. I know I just need to relax and wait but it’s so hard. It’s reassuring to hear cases with similar symptoms where the outcome ended up being ok. Thanks again.