8 days post-mastectomy, just got confusing breast pathology

nesw, well crap, that's not what you wanted to hear from the pathology report!

One area I can comment on is the microinvasion, since I had one too.  One point of clarification, however.  Was the microinvasion within 2cm of the margin or 2mm of the margin?  If it was within 2cm, then it's really nothing to worry about at all.  A single tiny microinvasion means that it's really good that your removed your DCIS, since it obviously was just starting to progress to become invasive, but just having that single tiny microinvasion usually doesn't change the treatment or increase the local recurrence risk.  It does change your staging from Stage 0 DCIS to Stage I DCIS-Mi, and with that comes a very very small risk of mets but the long term prognosis for those who've had microinvasions is not statistically different than those who've had pure DCIS (at least not in any of the studies I've seen).  The one question is whether you had an SNB at the time of your mastectomy.  If you did and the nodes were clear, then the microinvasion should really have no impact on you, assuming it ws 2cm from the margin.

If the microinvasion was 2mm from the margin, then it adds to the concern about the closeness of the margins at the nipple and the presence of ADH and ALH at the nipple.  Does that mean that the nipple needs to be removed? I don't know. I guess for me the question to the surgeon and oncologist would be: What do you estimate to be my recurrence risk and new BC risk (a possible new primary from the ADH or ALH), with this information from the pathology?  

I had a 1mm margin by the incision line after my MX.  During my exchange surgery, I asked my PS to remove a bit of skin on both sides of the incision.  The result is that the incision is not quite as smooth as it otherwise would be, but that was something I did for my own peace of mind. I didn't have a nipple sparing MX so I don't know what I would have done if the close margin had been by the nipple, although I suspect that I probably would have removed the nipple. I never wanted to have a MX but had too much DCIS in a small breast. I figure that the one benefit of the MX is that it's lowered my recurrence risk / new BC as much as it can be lowered. It's the only silver lining of needing to have the MX so I don't think I would be willing to give that up.  But those are my reasons and what I would probably do.  You have to decide what's right for you. 

As for your other breast, I don't know how worried you should be.  If there were numerous enhancing nodules in both breasts, it seems that a number of them were not DCIS. Were there other small areas that enhanced in your right breast?  You know that one that enhanced was the original diagnosis and another was the cancer behind the nipple; the rest of your breast tissue appears to have been cancer free so if there were more nodules, they weren't cancer. And the one that was biopsied on the left side wasn't cancer. So it could be that none of the left breast ones are cancer.  Would you feel better if you had a biopsy done on another one? 

I'm so sorry that you are having to deal with this! 

Okay, I've done a bit of reading and I think I'm clearer on this now.  I don't actually think it's the microinvasion that's the problem.  From what I've read, the presence of any cancer cells - DCIS or IDC - within 2 cm of the nipple margin is considered to be a concern for a NSM.  

For example, MD Anderson's guidelines for NSM state that there should be no evidence of cancer within 2.5 cm of the nipple, and when they are making the decision on which patients are eligible, they ensure that there is no sign of calcifications (i.e. the possibility of DCIS) anywhere leading up to the nipple. DCIS cells are confined to the milk ducts and the milk ducts run into the nipple so the presence of DCIS within a couple of cm of the nipple could actually be more concerning than the microinvasion (which is not likely to spread). My guess about your situation is that it's not the microinvasion that is causing the concern but the fact that 'DCIS with a microinvasion' was found within 2 cm of the margin.  I think if the microinvasion wasn't there, the concern would still be the same. 

As for your other breast, I'll admit that in your shoes I would be concerned too.  And I'm always the one to say that you shouldn't base your decisions on what happened to someone else.  But, as an FYI, at the time I was diagnosed, I was found to have suspicious calcs in both my breasts. I had biopsies on both sides. The biopsy of my left breast was benign; the needle biopsy of my right breast showed ADH and then an excisional biopsy showed ADH, lots of high grade DCIS with necrosis, and a microinvasion of IDC.  So I had a single mastectomy.  That was 7 years ago and so far, nothing more than a few cysts have shown up in my left breast in the years since.  So it is certainly possible to have one breast that's fine despite all that is going on in the other breast. Which of course doesn't mean that this is what's happening in your case... 

nesw, yes I had grade 3 DCIS with comedonecrosis.  Some of my DCIS was grade 2 and non-comedo, but most of my 7cm+ of DCIS was high grade and comedo. 

As for the other breast, only you can decide what's best for you to do.  Certainly with those enhancing nodules, you have a reason to wonder if everything is okay. If it really worries you and you believe that a BMX will give you peace of mind, then a BMX might be the right decision for you.  But if you make that decision, make it based on the facts of your situation and how you feel, not based on what someone else did or what happened to someone else.  Because what happened to someone else is no indication of what might happen to you. 

It's certainly true that some women who choose to have a prophylactic MX find out that there was something going on in the other breast. The studies I've read suggest that the risk of synchronous breast cancer is about 3% - 4%, excluding those who have ILC (which is more likely to be found in both breasts).  Thinking of the cases I've seen on this board, more often than not what's found is a high risk condition such as ADH or ALH or LCIS.  For someone who's already been diagnosed with BC one time, finding out that you also had a high risk condition in the other breast is scary and certainly confirms the decision to have had the BMX.  But the thing to remember is that most cases of ADH, ALH and LCIS don't ever develop into breast cancer. I had the UMX and maybe I have undetected ADH in my other breast.  If I'm among the 75% whose ADH never develops any further, then it's really not a problem. Having said that, I also know that if the biopsy that I had for calcs in my other breast had shown ADH, I most likely would have opted for the BMX instead of the UMX.

The following article talks about what the contralateral risk really is for the average woman (i.e. someone who is not BRCA positive or doesn't have extraordinary risk factors). It also presents an interesting discussion of the pros and cons of having a contralateral prophylactic mastectomy:  Contralateral Prophylactic Mastectomy: What Do We Know and What Do Our Patients Know?

Beesie - Agreed!  I'm glad she has two different experiences to show how individual and different we all are!  You do such a thoughtful and thorough job of sharing your experience whenever I see your posts.   Nesw  - good luck with your appt tomorrow!