Chemo for DCIS without microinvasion.....???

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Kkubsky
Kkubsky Member Posts: 231

I was reading something just recently that has me really anxious.... Chemo is given for pure DCIS if it is triple negative??.... I had not ever heard of this before. I thought DCIS didn't require chemo. And I didn't think HER2 was commonly tested. I know I am ER/PR negative but have no clue about HER2 status. Freaking out just a bit....well a lot actually.

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  • Becca953
    Becca953 Member Posts: 99
    edited October 2018

    I do not have a complete answer to your question, but just a few days ago I spoke with a Genentech (Herceptin maker) rep. She said years ago they did testing on treating DCIS with Herceptin, and it had no effect on survival. She also said that they know roughly 25-30% of DCIS is HER2+, which is higher than the actual rate once it grows into IDC at 15-20% due to mutations, and not unusual with cancer in general. I do not think that they typically test DCIS for HER2, because of this study she mentioned. I would contact your original breast surgical oncologist for clarification.


  • Sitti
    Sitti Member Posts: 230
    edited October 2018

    Kkubsky,

    I also had hormone negative DCIS. I've never heard where it is treated with chemo and I also wasn't tested for HER2 status. I have seen where a few people have been tested for HER2 but usually wasn't in USA. Do you know the source you got that information from? I wonder if that was something that was done way back but as research has continued they realized it wasn't needed. I hope you can get the answers you need and can calm the anxiety.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2018

    No, chemo is not given for DCIS.

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2018

    Prior to the discovery of IDC in my other breast, my treatment plan for DCIS was surgery only.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    This is what I thought as well....no chemo for "pure" DCIS. I can't find the original source but it had to be in one of the DCIS groups I am in. I will keep trying to find it. I did email "Ask an Expert" from John Hopkins and the reply was as follows....

    "If DCIS is indeed triple negative, we would treat it as such and give chemotherapy."

    I have asked for clarification on that response and am waiting to hear.

    My original question was "Is triple negative DCIS (no microinvasion) treated with chemo? I thought DCIS was contained in the ducts."

    I had some additional questions regarding DCIS and HER2 which were also answered and I got answers but it made me think that maybe it was referring to DCIS WITH invasion....Not sure but will see what the follow up response is.

  • Sitti
    Sitti Member Posts: 230
    edited October 2018

    I'd like to know what the final answer is as well, if you don't mind sharing after clarification.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    My follow up question...."Is this a new protocol? I was under the impression that pure DCIS didn't require chemo. And that HER2 was not routinely tested for DCIS. This is freaking me out quite a bit...."

    Here is the reply to my follow up question....

    "Very sorry this is freaking you out, understandable. DCIS is breast cancer, it is just confined within the milk ducts rather than having begun growing into the tissue outside of the milk duct. Chemotherapy is very individual to each patient, and yes, there are some patients who may not need it, even if it's triple negative (for very tiny breast cancers and possibly an older patient). Our best advice is for you to discuss your specific situation with your medical oncologist. It is true that HER2 is not routinely tested with DCIS. Again, every breast cancer is different and we cannot give a blanket statement for all patients."

    Not sure what to make of this answer....


  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    Here is the link to where both my questions are....

    http://www.hopkinsbreastcenter.org/services/ask_ex...



  • Sitti
    Sitti Member Posts: 230
    edited October 2018

    Even though my medical team said Dcis is breast cancer chemo was never on the table. I'm surprised and a little taken back. How are you doing with that response? Not sure what to think either.... although I think most widely accepted protocol is no chemo so I'm sure radiation is effective.

  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    I really don't know what to think. I have never heard this before. I wish I could find where I originally read about chemo and DCIS. I have looked everywhere and cannot find it. But whatever it was that I read is what prompted me to write to "Ask an Expert". I never expected the answer I got. It really just doesn't even make sense. If DCIS is confined to the ducts, what purpose would chemo have? Part of me wants to write back for further information but another part of me just wants to put it to rest. If I keep thinking about it I will call my breast surgeon or her nurse and see what they say.


  • LAstar
    LAstar Member Posts: 1,574
    edited October 2018

    My friend had pure DCIS in 2012, but her doctor in San Francisco prescribed chemo. (I always wondered if maybe she had a microinvasion that she didn't mention.) My onc told me that the hormone receptors change from positive to negative as the cancer is nearing the change from DCIS to invasive cancer, but I have never been able to find any research on this. I also thought that the change to invasive required some molecular change, not that it is just in the duct vs outside the duct. Where did you read this about chemo?

  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    I cannot find where I originally read about chemo for DCIS. It would have to have been in one of the DCIS groups I am in. It concerned me so I wrote to "Ask an Expert" from John Hopkins and got the above replies. But on another John Hopkins site it states no chemo...Here is the link- https://www.hopkinsmedicine.org/breast_center/brea...

    So I don't know why I received the answer I did. Everywhere else is very clear about no chemo for DCIS withOUT microinvasion or if it is part of an invasive cancer. Maybe I should follow it up again with "Ask an Expert".


  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    Ok so the answer finally got clarified....NO CHEMO for pure DCIS! The "Ask the Expert" corrected the info they had given out originally and apologized. In any case I am glad to finally have an answer that makes sense!!!!

    Not sure who asked for a clarification after I did but it worked and finally straightened out the answer.

  • LAstar
    LAstar Member Posts: 1,574
    edited October 2018
  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2018

    Here's the actually reply-

    First, our apologies for the confusion about chemotherapy and DCIS. We've consulted with a few of our medical oncologists and their answers are:

    "As long as it is DCIS alone and no invasion, we don't give chemo. DCIS actually has a high rate, about 60% of HER2 positivity, however our breast pathologists usually only check ER on DCIS."

    "We do not treat DCIS with chemotherapy regardless of hormone receptors or HER2 status."

    "Triple negative DCIS is certainly unusual, and we've not been testing for HER2 on DCIS as of late, mostly because it does not affect treatment considerations. For DCIS irrespective of receptor status we would not give chemo or Herceptin (for HER2 positive), the only options are endocrine therapy for prevention if ER+."

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