I had complete SMX 5 months ago for 7.5cm grade 3 DCIS & pathology results also showed I had Paget’s disease of the nipple.
Ive had a small patch of dry, scaly, itchy skin directly under my scar for a good 2-3 months & it just won’t go. I mentioned it to my surgeon a couple of times during my expander fills & she said it’s nothing to worry about just use some steroid cream. I’ve done this but it just comes back. I’m convincing myself it’s a Paget’s recurrence.
It sounds very worrying for you and completly rubbish situation for you.
Sending a virtual hug.
I cant answer your question but would you be abe to speak to your BCN at your clinic and ask them why this reacurring rash is nothing to worry about.
I think its legitimate to ask questions about your own medical situation and sometimes it can feel a bit easier to make a phone appointment with the nurse.
I know pagets is rare so I wonder if you could be put in touch with a support group so you can chat to others who really understand your situation probably online as less likely to have an in person meeting. Maybe you could ask your BCN or one of the BCN on this website what support there is.
Finally you can ask for a second opinion if you dont feel that you are getting the answers you need.
It can potentially feel awkward asking for a second opinion but there are good ways of saying it that does not come across as critical , mentioning the good things they have done in your care that you have appreciated and how important it is for you to feel that you can be involved in the shared care process as you know it is rare and would support you to know as much as you can .