It really does sound like you have had a raw deal with your diagnosis. I was worried at one stage that I might have something similar since after vacuum assisted biopsy they found a microinvasion. There was only one and 0.5mm. My DCIS was large (35mm on mammogram but 50mm following surgery) and high grade so I was fully expecting something worse when I got my results post-op but nothing else found. I sometimes wonder if they really checked it all when I am having a rare down moment. I hope your appointment on Wednesday goes ok and you get some good news for once. Fingers and everything else crossed for you. Ezzie. X
I totally understand your predicament, the confusion and the worry which you now find yourself having to endure. I was in your shoes just 3 months ago ... but it does get better. Here's my story which is just a bit more straightforward than Belle's.
I had a mastectomy for DCIS at the end of May. Mine was large but did partially show up on mammogram. I also had two lymph nodes taken away for checking as part of a sentinel lymph node biopsy. This was done as a precautionary measure with my mastectomy as it is more difficult to do later on if needed. It does not necessarily mean that the cancer has already spread unless they have told you otherwise.
My operation was three hours or so (from walking into theatre to coming round and having an intelligent conversation in recovery) and I was in hospital about 24 hours. I could have been done as a day-case but my carer for the first 24 hours didn't fancy fetching me out and looking after me that evening/night. My results were good and I need no further treatment/medication. I opted to have delayed reconstruction which I am waiting for now. Have you been given any information on reconstruction yet? If you want it of course.
I have been very fortunate and have made a really good recovery. If it wasn't for how I look with no clothes on, you would never know what I have been through!
If you want to ask me anything else. I am only too happy to help.