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Apr 7, 2019 02:34PM
Apr 7, 2019 03:40PM
I had nearly clear margins after my first surgery. Just one cell too close to the margin. The second surgery was supposed to take care of things, but those margins weren't clear either. They'd gone pretty deep into my breast already and did not think radiation would be enough for me anymore, so I had to have a mastectomy. They found even more DCIS at the original site and away from the original site. The MRI did not show any of this.
I was also dealing with Paget's, which may explain some of the occult nature of my DCIS.
On the pain front, mastectomy has not been too bad. Longer recovery, exhaustion, discomfort, tightness, and worry in those first few weeks, sure. A few months down the road: annoying sometimes, but definitely workable.
So I think these detours are common, but you can get to a good place, whatever path you're on.
I wish there were better ways to see what's going on in there...and how one will respond to various treatments...that would make these decisions and this process easier! If only...
Anyway, it is a pain when you hit a bump in the road. I'm sorry you are dealing with this, and hope you get to move forward soon.
Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER.
11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC)
11/10/2018 Lumpectomy: Right
11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR-
12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel
12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-
1/16/2019 Mastectomy: Right