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Topic: 8 days post-mastectomy, just got confusing breast pathology

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Nov 29, 2012 04:17PM

nesw wrote:

Hello wonderful women -

Last week I had a single nipple-sparing mastectomy with immediate reconstruction for multifocal DCIS with comedo cells.  At my one week post-op, they removed my drains and gave my my first expander fill of 60 ml. I actually felt good - I have my skin and nipple and it just looks like I'm deflated and waiting to be puffed back up. Then I got my breast pathology today. The tissue taken just behind the nipple by the breast surgeon shows DCIS with microinvasion (<1mm) and it is within 2 cm of the margin of the removed tissue (it's the only microinvasion seen in the entire breast). Then the final tissue shave taken behind the nipple by the plastic surgeon shows atypical ductal and lobular hyperplasia. My breast surgeon says he is conservative and is going to present my case next week to a large group for feedback, but he recommends removing the nipple/areolar region at the time of implant exchange.  I have two questions:

1. Knowing that I already have cancer, does it seem that the ADH and ALH behind the nipple pretty much represent a "must" for removing the nipple?

2. My original MRI showed numerous enhancing nodules <5mm in both breasts. There was only one large enhancing spot in my right breast (11 mm) and they decided to biopsy it and it was DCIS.  Now, after mastectomy, they say they found DCIS with microinvasion behind the nipple.  That must have been one of those numerous <5mm spots. They biopsied a <5mm spot in my left breast, which was benign, and decided it was overkill to remove both breasts. Seems to me I should be plenty worried about those other <5mm spots in my left breast?

Thanks in advance for any commentary. Reading these boards got me through my diagnosis and mastectomy, and I thought I would only have to worry about getting my breast reinflated at this point.

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Posts 1 - 11 (11 total)

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Nov 29, 2012 05:38PM Beesie wrote:

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! 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Nov 30, 2012 08:02AM nesw wrote:

Beesie - thank you so much for all of this info. I did have SNB and they were clear. According to the BS, the concern with the microinvasion was that because it was within 2 cm of the margin of the removed tissue behind the nipple, it was also within 2 cm of the nipple itself and, "by the book", indicated removal of the nipple/areolar region. Apparently expecting that I would ask about keeping the nipple, he preempted with a lot of info. He said there weren't enough data from nipple-sparing MXs with ADH/ALD left in place to give a risk of recurrence, and that imaging technology isn't the greatest for specifically viewing behind the the nipple if I was going to wait and watch. As well, radiation was not indicated because it would harden the implant. 

Seriously, I know I should just have the nipple removed and get on with it, and I'm sure that's what I'll do. It's just kind of mind-blowing to go from a routine mammogram to complete loss of my breast within a couple of months, and have even more crap added on when I was still trying to accept what had been done already. And I'll always be freaking out about my left breast. You make good sense that all the other enhancing nodules in my right breast were benign, and that may likely be true for the left breast. I just find it hard to completely accept that one breast can develop DCIS with comedo cells and microinvasion and the other breast is just fine. 

Dx 10/12/2012 DCIS-MI, multicentric, IDC microinvasion, Stage 1, grade 3, 0/3 nodes, ER+/PR+, HER2+

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Nov 30, 2012 10:06AM Beesie wrote:

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... Undecided

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Nov 30, 2012 07:28PM Grier wrote:

Nesw - I had the same issue...I was originally scheduled for nipple-sparing.  After my pre-surgery MRI, My BS could see calcifications behind the nipple and she told me she didn't feel confident sparing the nipple on my right breast.  Sure enough, when we got the path back, there were malignant cells found in the nipple.  I know it can be hard to switch horses in mid-stream, but bottom line, I'm so glad they are gone (I had both removed for a better cosmetic outcome).  I'm glad to hear your nodes are clean and that you have such a good prognosis.

G.

Dx 8/22/2012, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery 10/09/2012 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement (Both)Surgery 01/15/2013 Reconstruction: Breast implants (permanent), Nipple reconstruction (Both)
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Dec 3, 2012 03:22PM nesw wrote:

My BS is presenting my case to the tumor board Friday morning and I'll meet with him Friday afternoon. It just struck me that my right breast has everything just short of metastasis - ADH, ALH, multicentric DCIS with papillary and cribiform cells, calcifications with comedo cells, and microinvasion. I'm not sure how any doctor could just leave the other breast. Beesie, it sure sounds hopeful that your other breast is still healthy after 7 years - and I see that you had grade 3, meaning (I think) comedo cells, in your affected breast? Grier, you also had comedo cells? Was anything seen in your second breast in post-surgical pathology?

I'm also a little freaked out about the pain meds. For 7 days, I took one oxycodone (5mg) every 4-6 hours during the day with one Vallium at bedtime.  Now one hydrocodone (7mg) every 4-6 hours and one Vallium at bedtime. At my first fill (60 ml at day 7) I increased to about every 3-4 hours for a day or two.  Is this a lot?  The oxy directions said I could take one or two, but I would only take 1. How long were you on meds? They told me to take a Vallium before coming for my second fill tomorrow (day 14).

Dx 10/12/2012 DCIS-MI, multicentric, IDC microinvasion, Stage 1, grade 3, 0/3 nodes, ER+/PR+, HER2+

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Dec 4, 2012 07:16AM Grier wrote:

Hi nesw - yes, the cosmetic part I referenced above was related to my nipples.  I could have taken the "wait and see" approach with my left "good" breast, but had researched and decided I'd rather take the "never look back" approach.  My post BMX pathology revealed microscopic (intermediate grade) DCIS in my "good" breast...so the party was just getting started.  My BS told me that I had made the right call.

Dx 8/22/2012, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery 10/09/2012 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement (Both)Surgery 01/15/2013 Reconstruction: Breast implants (permanent), Nipple reconstruction (Both)
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Dec 4, 2012 11:34AM Beesie wrote:

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?

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Dec 4, 2012 01:17PM Grier wrote:

Thank you, Beesie - really good info.

I think some of my decision was I decided I wasn't so attached to my left breast that I wanted to continue monitoring (mammograms, biopsies, anxiety etc.)  So, it was probably a pretty radical approach, but as Beesie points out, was an individual choice.  I have a 7 year old and a pretty demanding career, so I probably made my decision based on emotion and convenience vs. absolute risk.  Still, I have no regrets.  Reasearch all you can, don't let fear overrule, fact and by all means, don't take my experience as an absolute for what you should do.  I wish you lots of luck and please keep us posted on how you are doing.

g.

Dx 8/22/2012, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery 10/09/2012 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement (Both)Surgery 01/15/2013 Reconstruction: Breast implants (permanent), Nipple reconstruction (Both)
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Dec 4, 2012 02:37PM nesw wrote:

Beesie - excellent paper.  Thank you.

Grier - I just really wanted to hear your own story. I'm reading and listening to everything prior to meeting with my BS Friday to discuss my post-surgery pathology. It seems every step of my journey, my situation has changed to the next worse  diagnosis and I want to be prepared to discuss the possibility of losing my other breast.

Dx 10/12/2012 DCIS-MI, multicentric, IDC microinvasion, Stage 1, grade 3, 0/3 nodes, ER+/PR+, HER2+

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Dec 4, 2012 06:40PM Beesie wrote:

nesw, you're welcome!

Grier, I agree completely that most important thing to do is research all you can, and don't let fear overrule fact. And just to clarify, when I suggested to nesw that she make her decision "not based on what someone else did or what happened to someone else" I was in part referring to your example but even more, I was referring to my own example. And to all the other examples - good and bad - that nesw will read about on this board. I've been lucky enough to have 7 years with no problems after my UMX, but that's not an guarantee, or even any indication, that the same would happen for nesw if she made the same choice. We all have to make our decisions realizing that we don't know what's ahead and what will happen. We have to look ahead and decide which of the treatment options we will best be able to live with, whatever might happen.  

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Dec 6, 2012 12:55PM Grier wrote:

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. Smile  Nesw  - good luck with your appt tomorrow!

Dx 8/22/2012, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR-, HER2+Surgery 10/09/2012 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement (Both)Surgery 01/15/2013 Reconstruction: Breast implants (permanent), Nipple reconstruction (Both)