Is the DCIS the black sheep of BC??

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Roberto487
Roberto487 Member Posts: 20
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

My wife was diagnosed with DCIS, but after a mastectomy, one out of two sentinal nodes tested positive for micrometastases of scattered  cells.  The path report says no invasive carcicoma identified.  I took my wife to sloan-kettering for a second opinion.  It turned out my wife's original Doctor was being more aggressive on the type of tests she ordered on the tissues that what Sloan Kettering would do.  Based on the diagnosis of DCIS in the path reports, the Sloan-Kettering doctor told us, that if my wife had had the surgery at her center, the sentinal nodes would come back negative because they would have not gone the extra length to do more tests.  She said scattered cells in the SN is a grey area and nobody (in the BC specialist community) knows what to do with them.  She dismissed the scattered cells as runaways that could have gotten loose by the 3 prior surgeries my wife have had.  She even went further to say, that if she removes the nodes, she is 100 % sure they would all come back negative.  She recommended no more surgeries on the remaining nodes and to see a medical oncology for a consultation to start my wife on hormonal treatment or light chemo, as a precaution.  Again all her recommendations were base on the original path reports.  Sher will run a new pathology report on the slides and re-evaluate the mammogram and MRI, but she had that look that said "do not look for something that is not there"

On speaking with the Sloan-Keterring ongologist's appointment person, they informed me that they don't treat DCIS nor do they do hormonal treatment.  They told me the breast surgeon could write a prescription for Taminofex (sp?).  Now, I may have to go back to the original doctor, with my tail between my legs.  I was totally skeptical to her methods to the madness but now I am relieved that she is going above and beyond on the tests.

 So I am asking myself why the lack of attentions on DCIS from one of the best breast cancer center in the world.  Any thoughts?

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited July 2010

    Sloan isn't big on DCIS, with the possible exception of Dr. Van Zee.  They seem to prefer the more serious cases - sometimes it seems as if they think they're wasting their time and talents on women with DCIS,  we're just not sick enough for them.

    That said, I can't believe that Sloan doesn't let women with DCIS see an oncologist for their Tamoxifen, and if that IS true, I can't believe the surgeon didn't know that was the policy. I think you should contact the surgeon's office and/or patient relations and complain.  

    You could always go to NYU or Columbia or Cornell for another opinion, but they might agree with Sloan.  I'm not familiar enough with your wife's situation/pathology to have an opinion on how to best treat it.  But both NYU and Columbia will let you see an oncologist - I know, because I saw oncologists at both.

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  • Roberto487
    Roberto487 Member Posts: 20
    edited July 2010

    Sweatyspice:  I myself was shocked when the oncologist''s office told me that, that I even questioned the lady why would the doctor tell me to see them in the first place.  The lady told me to call the doctor's office back and discuss the matter. 

     Also, I sensed that Sloan-Kettering is 100% certain that DCIS has only one path to follow and that there are no exceptions in DCIS.

    On the oncologist, I think I will contact the original Breast Surgeon for a recommendation.  I think there is an oncologist right next door to her. 

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2010

    Roberto, a question for you:  In another post you mentioned that the micrometastases in the nodes were non-invasive cells.  Is that true?  It is possible for the pathologist to determine if it's an invasive cancer cell or a non-invasive cancer cell.  If the cancer cells on the node were non-invasive, then there's no question that the cells were moved there accidentally, probably by a surgical instrument when the nodes were being removed. That's a logical explanation and it's something that's been known to happen. (I don't buy the comment about the cells getting loose during previous surgeries - how would non-invasive cells travel up to the nodes? The cells had to be placed on the nodes.) If those cells on the nodes are non-invasive, then you can feel confident that your wife's diagnosis is DCIS and she can be treated accordingly.

    Edited to add:  To your question, is DCIS the black sheep of BC?  Yes, it most certainly is.  That's why some in the field have actually proposed taking the word "carcinoma" out of the name Ductal Carcinoma in Situ, so that DCIS is no longer even considered to be breast cancer.   GrrrGrrrr..... makes me mad! 

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  • Roberto487
    Roberto487 Member Posts: 20
    edited July 2010

    Beesie: The path reports says "no invasive cells were identified"

    A second pathology has been ordered and we are awaiting the results.  The original doctor told me that there was not a concensus among the tumor board members on the sentinel nodes positive and this is why she was sending the slides to John Hopkins for a second opinion, before we told her to send it to Sloan Kettering.  On the cells travelling to the nodes, maybe you are right, and maybe the Doctors don't want to admit that they are not careful during surgery.  In all, we are more upbeat now, but cautious.

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