DCIS and unidentified microinvasion, anyone?

I am not sure if I was in the same position as you.  A few years back, I had what everyone believed was a stage 3 tumor.  I opted for a biopsy followed immediately with mastectomy in one procedure because of the palpable size of the tumor and because I have a history of bc in my family (my mother died of bc at a fairly young age, plus both of her sisters have had it).  I was told immediately after the mastectomy that they could tell it was not a stage 3 tumor, but they thought it was probably a stage 2 tumor.  When I had the pathology done, the pathologist staged my tumor as a stage 2 tumor, but he gave no measurements.  One of the oncologists that I went to for a consult was really disturbed at this and talked with the pathologist about it.  He said he didn't size it because he couldn't measure it because at least much of it was microscopic.  I didn't continue to see that oncologist.  The oncologist I see said the pathologist calls it a stage 2 so we will treat it this way, which we did.  I had chemotherapy (8 rounds) and 36 rads.  The tumor was triple negative, though I do not carry the BRCA1 or 2 gene.  I had 13 nodes removed no cancer in them at all, plus no vascular or lymphatic invasion.  I also had my pathology reviewed at a teaching hospital with a dedicated breast center.  I am not certain, but I am pretty sure I was downstaged to T1 at this point.  I know that I have only done 6 month follow-ups (based on the recommendation from the teaching hospital) and was told I got a lot of treatment for what I had. 

Last year I had a second mastectomy (thought it was prophylactic).  My breast looked normal, but it had lots of microscopic abnormalities: grade 1, 2 and 3 dcis with every tumor type, plus lcis and atypical lobular hyperplasia (the lcis and alh were considered insignificant by the pathologist).  This side was hormone positive.  Only one piece of the dcis was even measurable.  In my case, it was definitely breast cancer waiting to happen!  So, I went back to the the same place (Penn) to have my pathology reviewed, because I was worried about a missed microinvasion.  When I talked to the doctor there, he reassured me (based on my previous pathology from my original mastectomy) that the pathologist was indeed very careful and very cautious, that the more typical finding is that dcis is misdiagnosed as invasive cancer.  No invasive cancer was found in my second mastectomy and I had clear margins, but I know in the first one that I didn't have a stage 2 tumor.  Being cautious, the pathologist staged it as at least 2 centimeters, but I have no idea how big it was.  I know I had palpable dcis.  I plan on eventually asking my oncologist what I was finally staged at, even though I know I was progressively downstaged (my diagnosis code at my oncs now reads 233, though I know I did have some invasive cancer in breast #1). 

  If you did have an unidentified microinvasion, I would think that a mastectomy would be the standard treatment, especially since you have negative nodes.  I think I saw you were having a mastectomy.  I love not having real breasts.  I knew it was pretty likely I would develop bc, and I had been pretty vigilant about my breasts.  I had had two previous biopsies and was on 6 month check ups.  I know we never know with bc, but most of the time, I feel like I moved from a very unfavorable position to a much more favorable one when I had my breasts removed (it has improved my life in every way, even intimately).  I am in my 40s and feel like I have finally been freed from 25 years of breast tyranny.  I consider the day I had my first mastectomy one of the best days of my life!

Good luck as you move forward with your treatment.

"and they were unable to find my nodes,"

 OMGoodness!