Diagnosed with multifocal DCIS BUT...

Hi All-

I need some advice and some input.  I was diagnosed with multifocal ER/PR negative DCIS back at the end of March after a mammogram showed a 7mm cluster of microcysts (9o'clock position subareolar) and a 3mm (12 o'clock position subareolar) cluster of microcysts in the R breast.  I was labeled BIRADS-3 but insisted on a biopsy against medical advice which both showed intermediate grade DCIS.

Subsequent MRI showed an abnormal appearing 8x7x9cm mass along the right upper outer quadrant AND a 1.1 cm area with "suspicious kinetics" at the 12 o'clock position subareolar not in the same place as the original biopsy.  My MRI was "BIRADS-4" and an MRI guided biopsy was recommended.  I declined this as I had decided on a BMX which was scheduled for the next week (and I knew in my heart there was at least more DCIS in there if not frank IDC).  

In fact, I was expected to have IDC per discussion with my oncologist.  I got the port talk, etc prior to my surgery in anticipation of needing chemo postop.

Post operatively I was thrilled when my oncologist came into my room and said - it is all non-invasive DCIS.  However when I got my hands on my pathology report it mentioned that 11 slides were done of my 2000gram breast (this is roughly a 4.4 lb breast).  There were 4 slides done of the suspicious 8cm area - which was seen on the gross examination as being "widespread, ill defined and slightly nodular suspicious area."  4 of these showed small amounts DCIS - the largest single focus was 5-6mm.  FYI 11 slides were done of my left "prophylactic" side as well - so really just a survey look.

I have been asking all along - is 11 slides of this 8cm area enough and was the 1.1cm area really looked at.  I was assured that the pathologist "looked at everything."  I asked for a 2nd opinion and Mayo concurred with the diagnosis on the slides.  I asked for a 3rd opinion from Dr. Lagios and he also concurred with the diagnosis on the slides.  I was told by my onc that I was presented at tumor board and my MRI and path were specifically brought up side to side and everyone was satisfied with the DCIS diagnosis.

HOWEVER, when I asked Dr. Lagios if what was done for me (11 slides) was "sufficient" to rule out microinvasion or even IDC he said no (!!!).  Words like "shortcuts were taken" were used.  He said if he had processed my original sample he would have done perhaps 120 slides!

What makes it worse is that my NCI center threw out my mastectomy specimen and specimen blocks!!! So now there is no way to go back through the tissue.

I am stunned, devastated and having major anxiety.  I am in the position of "was expected to have more extensive disease" and then told I was fine however it now seems that no one really bothered to look!  My children are now 1 and 3 and I am just terrified about the future.  I realize no one can know anything for sure with this disease but I thought that at least I could take comfort in that the best look was done that could be done.  I am kicking myself for not having the MRI guided biopsies before BMX surgery now...

I am going to see a Mayo oncologist for a 2nd opinion next week but has anyone heard of this happening?  It seems highly possible that I could have had a missed IDC that I need chemo for - and I don't want to find this out 2 years or 5 years from now!!

Ladies, if you had a MX or BMX (especially if you had multifocal or multicentric DCIS) and you have your path reports handy - how many slides did you have done?  When I read the DCIS statistics for 5 year survival post BMX - 98-99% this is great however another way to read this is that 1-2 women per 100 die at 5 years from invasive cancer possibly due to a missed diagnosis at the beginning? Is this the dirty secret of the DCIS diagnosis??!!!

edited for spelling error