DCIS, BMX/MX, and radiation ladies

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited January 2012
    Hi all,

    I had my follow-up at Emory Monday, but am still awaiting final recommendations from the tumor board about radiation. I will wait to give all the details on that once they are in.

    In the meantime, something more shocking has come up. The medical oncologist from Emory called me yesterday to say that upon closer review of my slides they found a 3 mm area of invasion on my left side. My lymph nodes (3) that were taken were still analyzed as clear. My stage has been changed to T1a on the left. She now recommends I go on Tamoxifen to reduce the risk of metastasis, which she says is very, very low...but exists since I now officially have IDC.

    I am dismayed that 3 other pathology reviews missed this. I know it's small, but...come on. I'm losing faith in the medical profession! This better not have spread in the 4 months that I have been hanging out unprotected. Rant over. For now!

  • julianna51
    julianna51 Member Posts: 438
    edited January 2012

    dance - that is scary!   It does leave one feeling a little unsure about our medical care!  Hope you're doing well and no progression during these last months.  

  • julianna51
    julianna51 Member Posts: 438
    edited March 2012

    Bumping - for those who find they have to have radiation after MX for DCIS.   There are others out here!

  • audrey55
    audrey55 Member Posts: 2
    edited April 2012

    I'm totally confused. I had double mx for DCIS Oct 13, 2011. My mother died of met. breast CA. Older sister dx with stage 3 ductal breast ca. My margin was 1.5mm and it has been nagging at me. Path report said "estimated size: at least 1.8cm  &  number of blocks with DCIS:4"Any suggestions? I guess I just have to keep reading forums because I'm pretty confused. I think I have been just trying to adjust and didn't totally understand path report (even though I'm a RN). Forum helping. Initially when dr. did surg. he spoke to my husband and said I might need radiation...now surgeon and onc. say I do not need radiation.

     Also still having some swelling below incisions at  bottom of rib area....not sure if fluid from surg still needs to absorb or lymphedema. Was told I had a seroma...by plastic surg., breast surg. didn't say tell me...thought was normal post op swelling

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

    Audrey - is your margin anterior (near the skin) or posterior (near the chest wall)?  Typically rads is recommended if close margins are near the skin.  If near the chest wall and the pec fascia was removed, that serves as a barrier, and since DCIS by definition can't get out of the ducts, you do not need rads if the margin was posterior and the pec fascia was removed.  I hope that helps.  

  • KimD
    KimD Member Posts: 30
    edited May 2013

    Hi trancedancer,

    I appreciate your posts.  I just had a nipple, skin sparing MX on May 6.  My pathology said I had 4.5 cm of pure DCIS high grade, solid and cribiform type with comedo necrosis , microcalcs and focal secretory features.  DCIS is present <0.1cm from the Posterior (deep) margin in the lower outer quadrant.  I am pretty sure they removed the fascia.  My BS never mentioned the close margin at my post op when he discussed the path report.  He handed me a copy as I left. SNB removed one node and found, "three to 4 single cytokeratin positive cells, associated with giant cells.  AE1/AE3 immunohistochemical stain performed on blocks A1-A3 with adequate controls supports above diagnosis." (isolated tumor cells).

    My question is, how do I decide whether to have a second or third opinion on the pathology.  Reading your story makes me wonder whether I have hidden invasion, given the high grade and large size.

    Thanks in advance for your advice.

    Kim

  • ballet12
    ballet12 Member Posts: 981
    edited May 2013

    Hi Kim,

    This is an old discussion.  I'm not sure if the others who posted (back in 2012) will be reading your post.

    I had about the same amount of high grade DCIS taken from three lumpectomies (probably somewhere between 5 and 6 cm).  I was told that since the first lumpectomy found around 4 cms and it was all pure DCIS, that it was unlikely that invasive cells would be found in the follow-up re-excisions.  It was all pure DCIS, thank goodness.  You have an even larger sample, as the entire breast was removed, so if they didn't find invasion, again, it's not likely.  On the other hand, if you are worried, especially given the few invasive cells found in the nodes (thought to be there due to surgical procedure), you should go for a second opinion on the path slides.  It's so easy to do.  Plus you have that "close margin" issue.  You can have slides sent anywhere you want (best to have them sent to an NCI-designated hospital, although the other option is Dr. Lagios, whom many women have used on this board).  Good luck.

  • KimD
    KimD Member Posts: 30
    edited May 2013

    Thanks for your answer.  I am just nervous reading about  women who had different pathologists look at the excact same material and come to completely different conclusions.  It's scary.

  • ballet12
    ballet12 Member Posts: 981
    edited May 2013

    I know about what you are saying--that different pathologists see different things (sometimes necessitating two second opinions).  Make a plan to do something to ease your anxiety and answer your questions (meeting again with surgeon, path second opinion, radiation oncology opinion, etc.)  Then, when you are satisfied that you have done all you can do, then take a deep breath and keep going. 

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