Surgeon said no radiation or chemo now oncologist differs

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  • readytorock
    readytorock Member Posts: 199
    edited October 2016

    I would do chemo based on Oncotype score. The only people who are considered safe to skip chemo are those with low scores. 26 is NOT a low score.

    I did both tests as my Oncotype score was 18 and neither of my oncologists would say safe to skip chemo. My mammaprint came back low, but neither of my oncologists would accept that score over the Oncotype. One of those oncologists being from Dana Farber in Boston.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2017

    Regarding the recent MINDACT results and MammaPrint, please note that the Preview Content available for free on the New England Journal of Medicine (NEJM) website is not the complete publication, and it is not a comprehensive description of the study, the published results, or the limitations of certain findings. This is a highly detailed and technical publication, so I refer others to the original. The documents can be accessed here:

    Cardoso (2016): http://www.nejm.org/doi/full/10.1056/NEJMoa1602253

    (The complete article, including all Supplementary Materials, is available for purchase.)

    Hudis editorial (2016): http://www.nejm.org/doi/pdf/10.1056/NEJMe1607947

    (The complete article is available for purchase)

    Hunter perspective (2016) (Free): http://www.nejm.org/doi/pdf/10.1056/NEJMp1608282

    You can purchase a one-day pass to the NEJM, download and save complete pdf copies of the Cardoso paper and the Hudis editorial (plus any other articles of interest). Be sure to access and save down pdf copies of the Supplementary Appendix to Cardoso and a copy of the MINDACT Protocol. The Supplementary Appendix contains a large amount of additional data and information and is essential material.

    The MINDACT trial design incorporated a clinical risk classification (using a MODIFIED version of Adjuant! Online to assign clinical risk as "Clinical ("Clin") Low Risk" or "Clinical High Risk") and a genomic risk classification (MammaPrint ("MP") Low Risk or MammaPrint High Risk), yielding four different risk groups which were separately assessed:

    Clin Low / MP Low

    Clin Low / MP High

    Clin High / MP Low

    Clin High / MP High

    Patients receiving the MammaPrint test fall into one of these four risk groups, and should probably pay attention to the results (and caveats) applicable to that specific group. According to the NEJM paper, "Details regarding clinical risk assessment according to the modified version of Adjuvant! Online are provided in Table S13 in the Supplementary Appendix." Patients should discuss with their Medical Oncologist whether Table S13 can be used as a surrogate for determining their "Clinical Risk" along the lines of the MINDACT Clinical Trial Protocol, permitting one to focus on the appropriate patient cohort(s) that are relevant to their particular situation and decision.

    Always, always confirm your understanding of any information from such a publication with your Medical Oncologist to ensure accurate understanding and correct application to your situation.

    Patients should request copies of all MammaPrint / BluePrint reports and summaries received from the test provider (Agendia) for their review and records.

    BarredOwl


    UPDATE: Cardoso (2016) and all Supplementary Materials, including the Supplementary Appendix, are now available for FREE at the link above.

  • Lisey
    Lisey Member Posts: 1,053
    edited October 2016

    Readytorock, Currently the intermediate level is being evaluated by the TailorX study which has not come out. I disagree with you that intermediates should not skip chemo - that is not at all what oncologists are saying. It depends on a lot of factors and most oncologists believe the new cut off line will be 25.. .but again.. the results aren't out yet. If you do a quick search for 20 Oncotype, you'll see numerous women posted that their oncologists said no chemo based off of a 20 score. Maybe you had other factors leaning them to the chemo, but an 18 would usually get a 'no chemo' from oncologists. - editted to add, you had node involvement.. that alone changes things, plus ILC is a little different.

  • readytorock
    readytorock Member Posts: 199
    edited October 2016

    Lisey - I agree that many oncologists are saying no chemo for the lower intermediate scores (just not either of mine!), but it is not currently standard of care until TailorX changes that - and hopefully it does!

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2016

    Summer, It is important to keep in mind that everyone commenting here is doing so based on research they did based on their own situation. That information may or may not be applicable to you. Take notes on what people have said and use the information to have a discussion with your oncologist and hopefully a second opinion one. If there are studies you think are applicable to your situation, bring copies with you. se the information from here to guide your discussion, but it is not a substitute for a professional medical opinion. Perhaps call around to see if anyone can get you in sooner for another opinion. Ultimately you will need to decide what's best for you in the long term. I wish we all had crystal balls! Once you make a decision, don't look back. Best wishes.

  • Summer2016
    Summer2016 Member Posts: 135
    edited October 2016

    Thanks so much for sharing readytorock! As I mentioned above, I feel as though the rules of the game where all shifted on me....was told 'we go by size of tumor, grade, stage, and node involvement to decide if chemo is needed'. Which all of mine are low then all of the sudden there was this oncotype test that sank my ship. I know my oncologist didn't expect the 26 score as he told me that based on my clinical info it should come in low risk. Perhaps it rocked him a bit that his prediction was incorrect.

  • Summer2016
    Summer2016 Member Posts: 135
    edited October 2016

    Barredowl thank you for taking time to send me links for MindAct and Mammaprint. Looks like I have a lot of reading to do prior to my next appointment!

  • Lisey
    Lisey Member Posts: 1,053
    edited October 2016

    I'm always so happy when women come on and find the studies and do their own research. Too often women want to bury their heads in the sand and not dig into any of this so they don't even know what subtype of cancer they have. I'm on Facebook pages where women just have no clue what the SOFT, MINDACT, TAILORX, or ATAC studies are. Greatful for this site and the dedicated people who continue to help new women find the studies so they can do their own research. Knowledge is power!

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