Diagnosed with Stage 1 DCIS microinvasive,ER/PR+,her 2 + ,node -

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momof2minnies
momof2minnies Member Posts: 5
edited June 2014 in Stage I Breast Cancer

This week I had my 2nd lumpectomy-margins not clear first time. My onco is telling me if clear tamoxifen x 5yrs and radiation. No need for Herceptin since the NCCN guidelines say if microinvasive need only hormones. I am nervous about this, anyone have similar situation?

TIA Linda

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  • momof2minnies
    momof2minnies Member Posts: 5
    edited October 2012

    I should add that my breasts are very dense and it was difficult to pickup on mammo-MRI showed 2nd spot never seen on mammo.

    In reading here I have seen where women who have dense breasts thought they were clear only to have recurrence. I am leaning toward mastectomy right now I think.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2012

    Sorry to hear about your diagnosis. Dancetrancer had DCIS AND 3mm of IDC, ER/PR+ and HER 2 +. She has researched the issue beyond the NCCN guidelines. I strongly recommend that you read her thread and PM her! Good luck!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2012

    Hi momof2minnies - here are two threads I started on the topic of chemo/Herceptin or not for IDC > 1 mm but < 6 mm).  It is indeed not recommended by NCCN guidelines, however some docs go against this and feel you should be treated based upon some of the studies done by MD Anderson on recurrence risk in this group. 

    calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

    < 5 mm HER2+ IDC...why NOT chemo???


    If you are truly microinvasive, which is < 1mm, check out this thread (it's older, but some may still reply)...I've not seen anyone with microinvasive HER2+ get treatment beyond what your doc is recommending.  So first we need to know exactly how small the tumor is, and then go from there.

    Micro-invasive DCIS that is her2+++

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    momof2minnies, I'll second what dancetrancer said.  Although there may not seem to be a big difference between a 1mm microinvasion and a small invasive tumor that's only 3mm in size, even such a small difference in size can be significant.  This is simply because the larger the tumor, the more cancer cells, and the more cancer cells, the greater the risk that one or a few of those cells might have moved from the breast into the body.  There are 300% more cancer cells in a 3mm tumor than in a 1mm tumor, and that's why a 3mm HER2+ tumor might warrant additional treatments whereas a 1mm HER2+ tumor would not. 

    So knowing for sure that your microinvasion is a true microinvasion - it's no larger than 1mm in size - is very important. 

  • momof2minnies
    momof2minnies Member Posts: 5
    edited October 2012

    Thanks Ladies- ok at this point it does not say on my path report the size of my microinvasion- what do I do now? Have pathology rerun this? I had this done at a major medcal ctr, I can't believe they would eliminate such a big part of a specimen.

    TIA Linda

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2012

    Perhaps they didn't list the size b/c it is indeed less than 1 mm?  The only way to know for sure is to ask the pathologist.  I would call the pathology lab or ask your breast surgeon.  If you are not comfortable with the pathology lab and/or would just feel better with a 2nd path opinion, you can have the slides sent to another facility for a 2nd pathology opinion.  Hope that helps!!! 

  • momof2minnies
    momof2minnies Member Posts: 5
    edited October 2012

    Thanks I will be talking to the surgeon tomorrow-I will ask her. I will then call the lab if I don't get what I need from her.I am also calling for a second onco opinion because I am getting nervous that he said just hormones

    Linda

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    Linda, I thought I would just repeat here our exchange from the PM.  You indicated that the pathology report lists the area with the microinvasion as "PT1mi".  

    In conversation the word "microinvasion" can be used very loosely to describe any small area of invasion but if a pathology report uses the word "microinvasion" or lists the tumor as being "T1mi" (or PT1mi, which means it's based on the pathological findings) then you do have a true microinvasion, i.e. an invasive tumor that is no more than 1mm in size. If a pathologist writes it, then we can be pretty certain that it's based on the official definition. 

    That's good news!  

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2012

    That is great news! 

  • momof2minnies
    momof2minnies Member Posts: 5
    edited October 2012

    Good morning ladies- I have great news my margins are clear!!!!!!!!! I did ask about the her 2+++ and she said the  her 2 is based solely on the microinvasion part and being <1mm by definition the risks outway the benefits.I know they don't even test for it if no microinvasion because my SIL is going thru this too w/o microinvasion and no test.

    Radiation and hormones is the plan but I may still ask another opinion just because-now if I get conflicting info I will crumble.

    Linda

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited October 2012

    Wonderful news Linda - yay!!!  

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    It sounds like you had a good discussion with the surgeon and got all the information you asked about.  Great news on the margins, and good too that the surgeon confirmed that you have a true microinvasion. 

    You're right that with pure DCIS, often they don't even test for HER2 status.  Sometimes they do, but there is nothing that they do with that information, since there is no difference in the treatment plan for those who have HER2+ DCIS vs those who have HER2- DCIS.  There are a couple of clinical trials underway but at this point there are no drugs approved specifically to treat HER2+ DCIS.  And in fact the research at this point isn't clear on whether there is any difference in risk or aggressiveness with HER2+ DCIS vs. HER2- DCIS.  HER2 status is one area where IDC and DCIS are quite different, at least for now based on current medical/scientific knowledge.

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