Diagnosis changed, Very confused!

Rustym, I suggest getting one or more second opinions. You should NOT be confused about your treatment plan. Your doctors should know exactly what to recommend and be able and willing to explain to you why they are making those recommendations. You can't quit at this point, especially with a micro-invasion. 

I initially had a bad, somewhat confused and chaotic team, and switched to a much better team practicing at an NCI hospital. My surgeon, RO and MO knew exactly what to do, and went over the treatment plan in great detail with my DH and me. 

Best wishes!

Diagnoses can change between a biopsy and the surgery.  About 20% of cases where DCIS is diagnosed with a needle biopsy end up being upgraded to invasive cancer (usually just a microinvasion, as you and I both have) once the surgery is done.  And sometimes other things are found, such as the P-LCIS in your case.  So yes, that can happen.

There also can be disagreements about the treatment plan between different doctors.  I suspect in your case the P-LCIS has caused confusion because LCIS tends to be diffuse and that might be why initially you were told that a lumpectomy wasn't an option.  But on the other hand, LCIS doesn't need to be removed, and that might be the reason for the change back to the possibility of a lumpectomy + rads. 

Although the DCIS is the more serious condition, you might want to post in the LCIS forum on this board to ask about P-LCIS and what's normally done.  LCIS generally is considered to be a high risk condition, one that puts the patient at higher risk to develop breast cancer in any location in either breast.  In other words, it's not the LCIS itself that evolves to become cancer, so removing the area with LCIS doesn't remove the risk.  But P-LCIS is different.  I believe that P-LCIS is more like DCIS in that it's those P-LCIS cells themselves that may evolve to become invasive cancer.  If that's the case, then there is more reason to remove the P-LCIS. 

Sending your slides to a third party for analysis is a great idea. And
since your diagnosis is confusing - the P-LCIS adds a different
dimension than just DCIS-Mi - you might want to seek a second opinion on
the surgical plan.

One additional question:  Did you have a sentinel node biopsy at the time of your lumpectomy?  If not, has this been discussed with you?  Normally when a microinvasion is found, an SNB is recommended although these days there is a bit more discussion about this and whether it's necessary.

Rustym--My diagnosis changed from 2 biopsies to final pathology after a mx.  I never felt comfortable with my initial team and went to a NCI center before the surgery, I am in much better hands now.  

Please seek out a 2nd opinion!

RustyM - actually, your experience doesn't seem that far from the norm - it at all. 

It's common for a DCIS diagnosis to change following a lumpectomy. Once they knew that it wasn't just DCIS they told you that breast conserving surgery MIGHT NOT BE an option - that a conditional analysis, that suggests that they are looking into your case further & they at first didn't want you to get your hopes up. any times (and this is good) you have a 'team' of docs & they sit down together and go over all the info & then settle on a recommended course of action - I wouldn't assume that your dos are incompetent - it may be rather that they are assessing carefully what the options are before presenting you with a course of action. It sounds like that course of action may be further surgery with RADS or just RADS. 

You are right to have your path slides sent out & getting a second opinion is generally a good idea - but you also have to understand that there is not always a 'set' protocol - things can change based on very slight factors (ie - since you have a microinvasion, a SNB is generally warranted). It isn't easy, but there is one good thing which is that nothing that you have sounds like it is going to spread quickly - give it a week or so, ask questions of each of your docs, but yes, it is often very confusing at this stage of things. Best to get the best treatment plan in place before forging ahead. 

Iwannaseeyoubebrave, from what you've described about your diagnosis and from looking at your diagnosis line, it appears that your situation is actually quite different from Rusty's  - except that you both had unexpected surprises , including P-LCIS, from your surgery.  Most significantly, you have ILC (which is cancer) in addition to the P-LCIS (which is a high risk condition).  Plus you have a significant amount of IDC whereas Rusty has only a microinvasion, which usually means a tumor that is only 1mm in size. 

I mention this because for Rusty, with DCIS and P-LCIS, HER2 status doesn't play into the prognosis or treatment plan. HER2 status is relevant when it comes to invasive cancer, but a microinvasion is sometimes too small to even test for HER2 status.  In any case, with only a microinvasion (or 2), HER2 status doesn't usually affect the treatment plan.

Good luck to both of you getting the rest of the information you need to develop your treatment plans.