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No chemo for low Mammaprint?

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Laurenann78
Laurenann78 Member Posts: 3

I received news yesterday that my Mammaprint score put me in the low risk category. I'll be honest in saying that I was shocked. I was adamantly against AC-T chemo so I am relieved but I'm wondering if I should have TC for 4 cycles anyway since I'm only 38. Two MOs both felt I was ok without it given my low risk status. I'm just worried about making the correct decision

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  • readytorock
    readytorock Member Posts: 51
    edited November 2016
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    I had an oncotype score of 19 - so very low intermediate. I asked my MO if I could have Mammoprint test, and she said yes, but when it came back low, she said she still relied on the oncotype, so my intermediate score got me chemo.

    Have you had the oncotype test? I believe that is more considered standard of care rather than Mammoprint. At least as far as my MOs (I had two opinions- both the same). Neither would agree to no chemo even though that was what the Mammoprint test showed.

  • lisey
    lisey Member Posts: 300
    edited November 2016
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    I had an oncotype of 20, and a low mammaprint score. and I'm going with the mammaprint. The new studies show Mammaprint is a good predictor of who needs chemo and chemo would have only helped 3% anyway. I'm younger, I just turned 41 when diagnosed and my doc said she would never push for chemo for a Onco 20 with stage 1A and good margins. I had a BMX and am on Tamoxifen.

  • lisey
    lisey Member Posts: 300
    edited November 2016
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    By the way, the MINDAct study was published in August and proves Mammoprint can be used do decide on chemo. When Ready to Rock had to make her decision it was still in study mode, so her doctor wasn't giving it much weight. Now you can give the mammaprint a lot more weight.

    http://www.agendia.com/new-england-journal-of-medicine-publishes-mindact-trial-results/

  • readytorock
    readytorock Member Posts: 51
    edited November 2016
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    EXACTLY - my doctor(s) weren't giving the mammoprint as much credibility at the time. I'm thrilled to see that things have progressed in the short time since I have been diagnosed!!!!

  • Laurenann78
    Laurenann78 Member Posts: 3
    edited November 2016
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    My MO wouldn't use the Oncotype because I'm only 38 and she said it wasn't studied in individuals who are premenopausal. That said--the second opinion doc said he has used it for younger women. Thanks for your insight. It's definitely a tough call to make.

  • tigerpanda
    tigerpanda Member Posts: 2
    edited March 2017
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    My oncatype score came back as 19, my first MO recommends chemo, I went for a 2nd opinion and he sent for mammaprint test. I am waiting for the results. I am 52, post menopause, would be a good idea to base chemo treatment based on the mammaprint, low - no chemo and high - get chemo? I am not sure what to do, any suggestions would help. I am ER+, PR+, Her2-, lymph nodes were negative.

  • gb2115
    gb2115 Member Posts: 553
    edited March 2017
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    The mammaprint does give you a very black or white yes or no for chemo, there is no gray area. High risk = chemo, low risk = no chemo. My onc only uses mammaprint, so I had that done. I had one positive node (smallish amount), but came back low risk luminal A. She said the research is better compared to Oncotype. Apparently they have been using it in Europe for quite some time as well. I don't know if, regarding the research, if that's because I'm young or just in general. I didn't think to ask.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited March 2017
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    I'm going to jump in here because I have questions. Thank God for BC.org or I'd be in real trouble through this exciting journey! I need advice from experienced BC team members. Thanks in advance.

    Okay, I got Oncotype results yesterday. Score: 14. I realize this is in the low range, but I guess I was thinking, if I get 10 or below (like the TailorX study which placed low at 10 and below) I'll know NO chemo without question. I don't want chemo, but I want to make the best decision with what I consider the most important time to make it. I think my only true other risk factors are age (49), 1.8cm tumor and family history. Genetics clean, nodes clean (they only got 2) and clear margins. 2.3cm, which was initially a worry because it backed up to the chest wall. No radiation called for. I got BMX.

    So -- just to make damn sure I'm making the right call, I've asked my MO for Mammoprint. I'm fine if I have to shell out for it. Though I have good insurance. Why not, I ask? I guess I'm one who overloads on info -- but give me the info. She was not thrilled but agreed she could maybe make it happen "but not sure how". Huh? She's at MD Anderson!!! And what also bugs me is: (1) she said the latest study with Mammoprint is "flawed" -- Mindact -- and she said if she got a result in the mid range (18-30) she would not run Mammoprint for that patient. She's very nice, but I feel I may be switching to a local MO -- one I do not have to fly to see -- because this MO is going so by the book, and I feel it's a totally standard book. She was also strictly on the tamoxifen train, too, without even considering the option of ovarian oblation and AIs. I'm actually okay trying tamox but was already assumed to be in perimen. a couple of years ago. I went to MDA and a teaching institution for more robust discussions about what is on the horizon and ways to treat. I got great surgery, btw, and LOVE my BS and PS team.

    Would you guys get a Mammoprint run with a 14? Am I crazy to push? I've gotten a rec. for a local MO and look like I'm going to change but I'm happy to have the MDA MO run Mammoprint if she will. If not, I'll ask the new MO. I don't feel I am going to do chemo but want to feel sure of this decision. Is it okay if I don't start tamox. for another month or so? My surgery was 2/27.

    THANKS!!!! I need advice as you can see.

  • lisey
    lisey Member Posts: 300
    edited March 2017
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    I got mammaprint after a 20 oncotype. Agendia is great they only charge patients 500 if insurance declines it. I think this may end when mammaprint becomes standard over oncotype. I'm only 41 and my doc insisted on no chemo for a oncotype of 20. I didn't trust it so paid for the mammaprint myself. She was right. No chemo.

  • lisey
    lisey Member Posts: 300
    edited March 2017
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    also, you can start tamoxifen immediately and always stop if you need to do chemo.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2017
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    Re the statement above: "The mammaprint does give you a very black or white yes or no for chemo, there is no gray area. High risk = chemo, low risk = no chemo."

    This is probably no longer always the case following publication of the 5-year results of the MINDACT trial. MammaPrint may have a "binary" output (High Risk or Low Risk), but as a result of the design of the MINDACT trial and the available results pertaining to "discordant" groups, I wonder whether the perception that the test is more black and white than Oncotype is accurate.

    Results from the MINDACT trial with 5 years of follow-up were recently published (Cardoso (2016)). This is a highly detailed and technical publication, so I refer others to the original. The documents can be accessed here:

    Cardoso (2016):

    Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa1602253

    PDF version (Free): http://www.nejm.org/doi/pdf/10.1056/NEJMoa1602253

    Supplementary Appendix (Free): http://www.nejm.org/doi/suppl/10.1056/NEJMoa1602253/suppl_file/nejmoa1602253_appendix.pdf

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

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

    (Available for purchase)

    The MINDACT trial design incorporated two risk classifications. It used a Clinical Risk Classification (using a MODIFIED version of Adjuvant! Online) to assign clinical risk as either "Clinical Low Risk" or "Clinical High Risk". It used a Genomic Risk Classification (using the MammaPrint test result) to assign genomic risk as "Genomic Low Risk" or "Genomic High Risk".

    This yielded four different study groups (MP = MammaPrint):

    (a) Clinical Low / Genomic MP Low

    (b) Clinical High / Genomic MP Low ("discordant")

    (c) Clinical Low / Genomic MP High ("discordant")

    (d) Clinical High / Genomic MP High

    The group that is Low Risk by both criteria (Group (a)) and the group that is High Risk by both criteria (Group (d)) are "concordant" (same: Low Low or High High).

    The two groups that have different clinical and genomic risks (one Low and one High) are "discordant" (Groups (b) and (c)).

    Part of the study looked at whether directing chemotherapy decisions on the basis of genomic risk or on the basis of clinical risk led to any difference in distant recurrences in the "discordant" groups. The study had some limitations. For example, the study was not adequately powered to demonstrate the statistical significance of some differences between groups for all endpoints. A medical oncologist should be able to explain possible caveats arising from these limitations to you. In any event, the information provided by the test and the medical advice received in light of same, will likely differ according to these groupings.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2017
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    Hi EastcoastTS:

    In considering whether you should push for the MammaPrint test, you may wish to ask your Medical Oncologist for advice about your "Clinical risk classification" according to MINDACT trial criteria. Then ask her to explain the two possible outcomes of the MammaPrint test with your Clinical risk classification, as well as how the test results may or may not better inform your decision-making in light of available clinical trial data.

    For example, a person who is deemed to be "Clinical Low Risk" under MINDACT criteria, would either be found to be in either the (a) or (c) groups per my post above:

    (a) Clinical Low / Genomic (MammaPrint) Low;

    or

    (c) Clinical Low / Genomic (MammaPrint) High <===== "discordant"

    What would be the medical advice in case of each of these outcomes? Would it impact advice regarding chemotherapy in your particular case, in light of all applicable factors? Please explain.

    By the way, regarding Oncotype, with ILC, "high risk" Recurrence Scores are not very common. See e.g.,

    http://www.clinical-breast-cancer.com/article/S1526-8209(15)00168-8/pdf

    Also, you may be interested in the references in this postregarding Aromatase Inhibitors in ILC:

    https://community.breastcancer.org/forum/96/topics/849708?page=1#post_4903818

    BarredOwl

  • tigerpanda
    tigerpanda Member Posts: 2
    edited March 2017
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    I have similar situation, did you get chemo done finally?

  • eastcoastts
    eastcoastts Member Posts: 352
    edited March 2017
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    Hey, guys --

    Thanks for all responses!

    BarredOwl, you're so famous on BC.org, I was hoping you would respond!!! Smile

    Okay, update somewhat. When I mentioned MindAct to my MO, she was very adamant that MindAct is "flawed" -- she did not explain why. She was also opposed to running Mammaprint and said "MD Anderson does not use it", which I find hard to believe. So I'm flying by the seat of my pants a bit, but I asked for it (and said I would pay if insurance does not) and they have agreed. Basically to appease me I feel. At least I'll have the score. I'm not in panic mode at all; I simply want data to base my decision(s) upon. Truth be told, I'm not going to get any more info on MindAct or Mamma much from this MO. I'll get the score and little else I bet. Also, again, I'm disappointed that this is my MO response from a leading institution. Had hoped for a more robust discussion regarding everything in my future. I did ask her about my overall "clinical risk" (not based on any trial because I did not know how to pose that in this manner) and she said: low. Which I'd already kinda figured out myself from path, etc.

    I will take all results to my local MO when I have them, whom I've yet to meet. Arranging this as 2nd opinion, not just for chemo but Tamoxifen discussion (since I'm in perimena and fairly close to mena. perhaps.) I am not opposed to Tamoxifen actually at all but just want to discuss my options. I don't know why some doctors do not seem to want to do that. I have researched a lot; some don't seem to want informed patients. I'm being very nice -- but firm -- about my treatment decisions. Like, who else is going to champion for me? Well, ME!!!

    What a fun merry-go-round we find ourselves on!!! It's lucky I like parsing through data. Good grief.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited March 2017
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    For those facing these decisions soon or now: I should add that I am NOT leaning toward doing chemo. No one is recommending that I have spoken to. I simply want all info I can get to feel certain in my decision. And why not have science behind me? Although I realize conflicting info from Mammaprint may cloud the issue but so be it, if so. I just want to feel I've done all I can from research standpoint, not from overtreatment standpoint. If that makes sense!!!

    Good luck to all facing these decisions. And so grateful for BC support. I literally could not have moved forward since 1/4/17 without you guys.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2017
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    Hi EastcoastTS:

    If you enjoy parsing data, then you should find Cardoso, its Supplementary Appendix, and the Hunter Perspective linked above, to be of great interest.

    I note that these types of biomarker tests provide prognostic information about recurrence risk based on clinical studies comparing outcomes between groups of patients. The recurrence risk information associated with a particular test result (e.g., Oncotype Recurrence Score; Clinical risk-Genomic risk classification by MammaPrint) is statistical in nature, and cannot predict outcome at the individual patient level. Because of this, while certainty is not possible, you should have enough information to help you reach an informed decision.

    It is unfortunate that your MO did not explain the basis for her opinion that the MINDACT trial was "flawed" or provide you with a reasoned explanation for why she did not recommend the test in your specific case. Like all clinical trials, MINDACT was subject to certain practical constraints, and the trial design resulted in some findings at five years that are less definitive for certain clinical endpoints / subgroups than one might wish. For example, in one feature, Dr. Lee Schwartzberg, MD, FACP, commented:

    "Additionally, the lack of conclusive guidance in the clinical-low/genomic-high group, in whom decision-making would be aided by a definitive result as to adding chemotherapy or not, makes the judgment to order the 70-gene assay in the clinic still a difficult one."

    For those receiving the test, to understand how the MINDACT results apply in the individual case, the clinical risk categorization should be made using the same criteria used in the MINDACT trial. Your second opinion Medical Oncologist should be able to advise you in this regard.

    BarredOwl

  • gb2115
    gb2115 Member Posts: 553
    edited March 2017
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    Barred Owl--thanks for the links!!! Right---yes, my MO explained it to me as either or, or at least that's how I heard it. I just read through the MINDACT info, and see the statistics she gave me definitely match up with one of the discordant groups (the high clinical risk, low genomic risk), rather than just "low risk." Which definitely fits my case with a grade 2 tumor plus 1 positive node. So at least we know one MO out there is considering the MINDACT results and how it applies individually. She and I went over risk vs benefit of adding chemo and decided not to do it. So perhaps not completely black and white. I was told adding chemo would add something like 1 or 2%, maybe 1.5. I can't remember. She said she'd do it if I wanted, but didn't recommend it.

    So hard either way. They are trying to predict the future. And no one can see the future!!!


  • moderators
    moderators Posts: 7,915
    edited May 2017
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    By the way, in case anyone is interested in participating:

    Interview Opportunity: Foundation Medicine, a leader in biomarker testing, is seeking to better understand the patient experience and perceptions of biomarker testing (also referred to as molecular, tumor, or genomic testing). If you have had biomarker (genomic) testing, and live in the USA, they'd welcome the opportunity to speak with you. In appreciation of your time and for sharing your perspectives, they'll provide you with a $50 Amazon gift card. If you fit the criteria, and are interested, please email tamar.sekayan@rx4good.com. They will schedule time for a phone conversation that should last approximately 45 minutes to 1 hour.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited May 2017
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    To my layperson's knowledge, Foundation One's current tests are not used to inform the question of whether to add chemotherapy to endocrine therapy in hormone receptor-positive, HER2-negative patients with early stage breast cancer, which is essentially the focus of this thread.

    http://foundationone.com/index.php

    There are already a number of clinical trial publications that investigated the patient experience and perceptions of biomarker testing. If this is not a clinical trial or formal study, but simply an attempt to connect directly with patients ("Interview Opportunity"), I would have some concern that it could be a thinly-veiled attempt to promote their tests directly to patients who may lack familiarity with the current clinical use of such tests or the scope of clinical validation.

    The commercial provider is not an unbiased source of information. So, rather than contact the commercial provider in the first instance, if patients have any interest in Foundation One testing or other types of tests, I would recommend that they first inquire about it with their Medical Oncologist, who has a duty of care to the patient and is familiar with the specific facts of their case.

    BarredOwl

  • moderators
    moderators Posts: 7,915
    edited May 2017
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    BarredOwl, We passed your concerns along to our contact there. We'll post when we hear from them.