Diagnosis changed, Very confused!

Rustym

Diagnosed with DCIS via biopsy, had lumpectomy and diagnosis changed. Very confused!   I had the lumpectomy and a week later I was told that my diagnosis changed to P-LCIS with micro invasive carcinoma.  After this I was told breast conservation might not be an option.  A week later I was told it was.  Just had appointment with one of the doctors in my chain of doctors and she said maybe just radiation.  I asked for my pathology slides be send to third party for analysis.  Boy from what I've read and the variance on  treatments, have left me confused and feeling like I want to quit this thing.  Has any one out there had this experience with diagnosis and treatment problem.

pupmom

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!

ED2012

Rustym - I completely agree with yorkiemom's post.  Don't settle for anything less than a complete and thorough understanding of all options associated with your diagnoses...and a recommendation of which one your doc believes the best option for your individual situation.  If that means seeking out second/third opinions, do it!  Very important to have confidence in your doctors and an understanding of your care plan!  Wishing you all the best.

Beesie

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.

AZ85048

Rustym - I agree!  Don't settle for chaos.  You need to be very clear about what it is you're up against.  And honey, you can't quit - not until you win!  Your life is too important to give up.  So take a deep breath and get yourself some answers and a treatment plan you can live with!  We're all here with you...

Sam2U

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!

Kicks

Seek a third (or fourth or more) opinion so you understand what they are telling you and feel comfortable the info you're being giving.   "Being comfortable" with the information you're being given is not say that you like what you're being told (no one likes to be told about any serious situtation) but that you understand what is going on, understand the TX plan AND have confidence with your Drs.

I know nothing about either of the potential DXs you mentioned so can't make any comments about them per sec.  While it is not the 'norm' to get major changes in path. report between biopsy and surgical path. it is quite possible.  A biopsy only checks a small portion of the site so it is not a complete 'picture', surgery on the other hand removes the entire area and it is then all checked so 'other/different' 'things' can show up.  Also duriing the time frame (even a short one) between biopsy and surgery, there can be changes and progression.

There is no one protocol that all Drs follow.  Yes, there are some that are somewhat standard but none are 'set in stone'.   Our Drs all have different experiences to make their suggestions from and our bodies are very different (some have other major health issues - some don't) so not all can handle the same TXs that some others can.  In my case - my TX plan was different than most other IBCers, though somewhat similar.  The SOP is to do 2 different neoadjuvant (pre surgery) chemos, surgery then to rads - I did 4 DD A/C neoadjuvant followed 2 weeks later with a UMX and 3 weeks later started 12 weekly adjuvant Taxol, followed a week after last one with starting 25 rads.  The only point of me mentioning this is to show that there can be different TX paths that can 'work'.

When you see someone else, take a tape recorder (your Smart phone) with you and record what you're being told.  When you are home, you can then go over what was actually said to you - not just your memory or someone elses memory as to what was actually said.

If you don't understand the way 'things' are being explained to you - keep asking til you do.

ziggypop

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

Rustym, I am in the exact same boat as you.  My biopsy originally showed DCIS and IDC.  I went for the lumpectomy on 1/6/14 only to find out that pathology reports now show P-LCIS and ILC.   From what I've read, this type of cancer can be a bit trickier to detect as well as treat.  Based on that, my oncologist who I saw on 1/21 decided to run the tests again as well as take my case to a upcoming conference to discuss my case.  As much as I HATE the waiting game (won't see her again until 2/6) I love the fact that this is being looked at again under the microsope as well as being discussed with other top notch doctors.  Don't ever quit!  I would ask for a 2nd opinion.  Nobody can deny you that.  You deserve to have all eyes on you to help plan out the best treatment for you.

I'm curious, what was your HER2 result?  My biopsy results came back equivocal so they ran it again from the lumpectomy and unfortunately it came back the same (equivocal) with the FISH test.  So I sit and wait in the "grey" area until 2/6.

Beesie

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.