Desperate to connect with someone who has Pagets Disease

Sushifan756

I posted last week regarding my suspicion that I have Paget’s disease on my right nipple. I am angry that I have to wait a month to get a biopsy. My nipple is getting worse everyday- today it was flaky and peeling and clear liquid oozing. I am also in pain, like burning sensation that is painful/sensitive in the affected nipple.

I was at the surgeons twice and I read her after visit notes. She basically said she thinks it is benign (a papilloma) and looks nothing like Pagets and that I have extreme anxiety after reading about Pagets on the internet (how do you not have anxiety when you have to cope with the unknown fir months). I don’t think a Papilloma will cause a flaky nipple. My nipple looked fairly normal the both times during the office visit so I know she wasn’t getting the whole clinical picture, which I had explained to her in details. I just feel so helpless. I am not looking for reassurance- I just want to know if I had Pagets or not. My nipple was normal just two months ago and this is not normal.

I cannot find anyone to connect with. Most of my friends have never even heard of Pagets. I am afraid that when I get diagnosed (which will be over a month away since biopsy is scheduled for early December), I won’t know what to do. I feel so lonely and scared. I haven’t been able to get a dermatologist appointment either.

If you have any advice, please share.

Brand

So I was diagnosed with Paget’s and DCIS almost a year ago. My only symptom was that my nipple/ areola was red. It did not respond to hydrocortisone or antibiotics or any other cream. I had a mamo, ultra sound and MRI and all showed absolutely none of the 3cm of DCIS that was in the breast.From the time I really noticed symptoms to a biopsy was just about 4 months but my nipple was red for a few months before that - just not as noticeable. i just thought I had a rash. Anyway, even with all that wait, it was still stage 0.

it’s good that you are getting a biopsy for piece of mind.