"High Risk" Mammaprint Luminal Bs- what was your 'score'?

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Comments

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

    Hi LuvToCraft:

    I should clarify that by "personalized" I do not mean for you individually, but according to MammaPrint Index ("MPI") value. If the average "recurrence" risk is being reported out differently according to MPI value (which is not entirely clear to me), then this is a relatively recent change.

    How is MPI Value Generated? These tests look at the expression levels of 70 genes from tumor cells using microarray technology. The combined expression levels form an expression pattern or "gene expression profile". The MPI value appears to be generated from the patient's microarray data by a software program which uses an algorithm. The program takes the expression data from 70 genes ("sample expression profile") and assesses its degree of similarity to an established low risk expression "template" profile: a comparator profile which is a "the mean expression profile of 44 tumors with a known good clinical outcome" or low risk profile. The MPI value is a value on a scale from -1.0 to +1.0 reflecting the correlation of the patient's expression profile to that of a low risk template profile, with values closest to +1.0 reflecting the highest degree of correlation to the low risk comparator. After the correlation step, the output (MPI value) places one in a cohort (High Risk (below zero, lower correlation) or Low Risk (above zero, higher correlation). Various clinical trials have assessed recurrence risk among High Risk patients.

    Regarding the 2008 article that you linked, my point was that it is not the last word on older, post-menopausal women receiving MammaPrint, given that there are subsequent studies. Conceivably, the results of subsequent studies might differ and alter understanding. I have not looked at that question and do not know the answer, so please ask your MO about it. As far as specific publications, re MINDACT, I was referring to Cardoso (MINDACT)(2016) which you have and which is the most recent trial, the largest trial and fully prospective. RASTER was an earlier, somewhat less robust study:

    Drukker (2013)( RASTER): "A prospective evaluation of a breast cancer prognosis signature in the observational RASTER study"

    Main Page: http://onlinelibrary.wiley.com/doi/10.1002/ijc.28082/abstract;jsessionid=0A0CC3A2280D41D5954641C8E78686B5.f04t03

    PDF of article: http://onlinelibrary.wiley.com/doi/10.1002/ijc.28082/epdf

    Data Supplement: http://www.readcube.com/articles/supplement?doi=10.1002%2Fijc.28082&index=0&ssl=1&st=ffefc88d8aea779ee128301f3790cf9c&preview=1

    Drukker (2014): "Optimized outcome prediction in breast cancer by combining the 70-gene signature with clinical risk prediction algorithms"

    Main Page: https://link.springer.com/article/10.1007/s10549-014-2954-2

    PDF of article: https://link.springer.com/content/pdf/10.1007%2Fs10549-014-2954-2.pdf

    See also Supplementary Material available at Main Page.


    Expert professional understanding of the test outputs and related clinical trial findings seems critical to according proper weight to the test results and related treatment advice and risk estimates. Do your current MO's focus on the treatment of breast cancer patients or are they generalists? Given that they did not suggest the MammaPrint test to you, do you know if they have ever used the test before? If not, that might be another reason to seek a third opinion at a bigger more experienced place (e.g., NCI-designated Cancer Center).

    BarredOwl

  • LuvToCraft
    LuvToCraft Member Posts: 13
    edited September 2017

    OK, so its been a very eventful couple of days. On Tuesday, I called Agendia to again speak to the doctor to clarify a few of my questions/concerns. She went above and beyond to address my concerns regarding the MammaPrint. By the way, BarredOwl, to answer your question, the 29% high risk recurrence on the summary page of the MammaPrint is referring to distant recurrence, not local, and not a combination of the two, just distant.

    Secondly, she was kind enough to send me an email, outlining everything we had discussed, so I could show it to my onco, with whom I had a scheduled apmt today, Wed. This email contained the benefit percentages to me if I chose chemo, (less than .9%, based on being low clinical/high genomic risk, it had graphs, etc. I printed out the articles form NEJM, ASCO, and any other information that I wanted to discuss with the dr.

    In addition I placed a call to my breast surgeon, as well, yesterday, Tuesday, just to ask some specific questions about my tumor pathology, grading, etc, and was advised that they usually do not grade lobular cancer, but that the type I had, classic lobular, is usually grade 1 or 2. I needed this info to be sure I was indeed low clinical risk for my treatment decision. I brought her up to date on everything that's transpired since my last visit, because she was unaware of the additional MammaPrint situation. She just knew about the Oncotype results of my 21 RS. When we touched on my dilema of treatment options, she basically said she has to defer to the oncologist, which I understand. Then this morning, Wednesday, she called me at 9:30AM to tell me that she just had a meeting at the hospital with the tumor board, so she brought up my case. Two oncologists, one the head of oncology and research at the hospital, and also in private practice, both said that they would just recommend endocrine therapy. She gave me their names in case I was interested in seeing a different MO. But I was encouraged to know that these two docs would only recommend hormone therapy, and no chemo. How nice was that of my breast surgeon for doing this for me!!

    Now on to my 1PM apmt with my MO. Armed with piles of printed material ready to go over all the data, which I was hoping he would be open to discuss with me. When we sat down, he explained that he had done further delving into my case, and told me that in my situation, I wouldn't gain much from doing chemo, perhaps only .9% benefit.

    THEN, he goes on to tell me that just yesterday he received brand new data from Oncotype, which hasn't yet been published, but they have established new guidelines. They now will be considering recurrence scores of 1 thru 25 as low risk, no chemo needed, (rather than 1 thru 18, as is currently the case). He showed me studies, graphs, etc from Oncotype, which showed zero benefit in doing chemo for those under 25. He just received this yesterday, but could not give me a copy of the printed material, because it has not been published. He promised me a copy, as soon as it is published. So although, based on their previous guidelines, and my intermediate score of 21, he still didn't recommend chemo, until Pandora's box was opened with the MammaPrint results, changing his original thoughts to chemo, he now feels totally confident to not recommend chemo. So needless to say, I didn't even need to go over everything I brought along, because he had completely revised his recommendation.

    Based on my age, my clinical risk, and the new guidelines with Oncotype, the MO is confident that hormone therapy is the way to go.

    Just wanted to let everyone know of these new guidelines from Oncotype Dx.

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

    HI LuvToCraft:

    I am glad to hear you that you obtained additional advice re grade (given its impact on proper Clinical Risk categorization per MINDACT criteria and application of the trial findings), as well as obtaining some input from the tumor board, and more productive discussions with your team that have addressed your questions and concerns.

    Thank you also for reporting back on what you learned re the nature of the 29% recurrence risk estimate.

    Since it is the original topic of this thread, did you also happen to obtain any additional information as to whether the average recurrence risk with no treatment is being reported out differently according to "High Risk" MPI value (i.e., Are the dots being positioned differently in the "High Risk Luminal-type (B) Summary Report" based on reported MammaPrint Index value)? If so, were you pointed to a published study that demonstrates such differences?

    Best wishes,

    BarredOwl

  • LuvToCraft
    LuvToCraft Member Posts: 13
    edited September 2017

    BarredOwl:

    Re: << Since it is the original topic of this thread, did you also happen to obtain any additional information as to whether the average recurrence risk with no treatment is being reported out differently according to "High Risk" MPI value (i.e., Are the dots being positioned differently in the "High Risk Luminal-type (B) Summary Report" based on reported MammaPrint Index value)? If so, were you pointed to a published study that demonstrates such differences? >>

    When I asked if everyone's recurrence risk was different, based on their actual "High Risk" value, I was told that the average is still 29%, as a result of the study, but that someone with a MP value closer to 0.0, (compared to closer to the -1.0), will have slightly less recurrence risk. For example, my score of -.090 will have an 18% 5yr recurrence risk, (according to where the dots fall), whereas someone with -.350 or closer to -1.0, may have a larger than 29% risk, but according to the study, everyone in the high risk group has 29% on their summary report as per Agendia, even though the dots are positioned differently, based on individual scores. I was not pointed to a published study that demonstrates that difference. I can reach back out to Agendia to inquire.

    Thank you again for your tremendous amount of help.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2017

    Are these 5 or 10 year recurrence risk?

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

    Hi Meow13:

    In my layperson's understanding, the 29% recurrence risk is a 10-year average distant recurrence risk IF UNTREATED (no endocrine therapy and no chemotherapy) determined in a group of patients with a "High Risk" MammaPrint test result. Per "archived" sample summary reports (no longer in use), there is an associated Confidence Interval ("CI"). For example, the MammaPrint "High Risk" population average 10-year distant recurrence risk if untreated is 29% (95 % CI: 22% - 35%). A 5-year risk estimate for MammaPrint "High Risk" was also provided in sample "archived" reports:

    image


    In contrast, the average 5-year and 10-year recurrence risk among the MammaPrint "Low Risk" population is different:

    image


    LuvToCraft was informed that the 29% "High Risk" risk estimate is a "distant" recurrence risk if untreated. Indeed, the above "archived" summary reports each specify "Distant Recurrence Probability without Treatment."

    The Agendia web site currently indicates that the above MammaPrint "High Risk" or MammaPrint "Low Risk" 10-year distant recurrence risk estimates "if untreated" or "without Treatment" are "without any additional adjuvant treatment, either hormonal therapy or chemotherapy:"

    image


    Again, the above risk estimates are based on data from patients who received either a High Risk or Low Risk MammaPrint (70-gene test) result. Unfortunately, Oncotype and MammaPrint risk category assignments are not always concordant in individual patients. Therefore, unless you received a MammaPrint test result, it not clear which of the above risk estimates (High risk or Low risk) applies to your situation.

    Those with pending treatment decisions should confirm the information above with their Medical Oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.

    BarredOwl

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

    Hi LuvToCraft:

    Thank you for that additional explanation. If you feel like inquiring about about a published study, please let us know what you learn.

    You mentioned: "For example, my score of -.090 will have an 18% 5yr recurrence risk, (according to where the dots fall), whereas someone with -.350 or closer to -1.0, may have a larger than 29% risk . . ."

    Here you are discussing the 5-year risk, and (assuming I am reading the report correctly), I note that the sample "High Risk Luminal-type (B)" summary report on-line shows an MPI of -0.350 with around ~21% risk at 5-years (left dot) (distant recurrence risk without any systemic treatment). At 10-years, it shows an MPI of -0.350 with around ~27% risk at 10-years (right dot) (distant recurrence risk without any systemic treatment).


    image



    Re: " . . .but according to the study, everyone in the high risk group has 29% on their summary report as per Agendia, even though the dots [at right] are positioned differently, based on individual scores."

    Here, the 29% risk is a reference to the 10-year High Risk group average (distant) recurrence risk if Untreated shown in the middle box at left in the "High Risk Luminal-type (B)" summary report:

    image

    As mentioned in my previous post, archived reports provide the confidence interval for that 29% group average: the MammaPrint "High Risk" population average 10-year distant recurrence risk if untreated is 29% (95 % CI: 22% - 35%).

    Edited to add:

    As I noted earlier in the thread, you can see that the 29% risk estimate in the middle box at left above includes a citation to Reference (1): Buyse M, et al. J NatlCancer Inst. 2006 Sep 6;98(17):1183-92. Unfortunately, I could not find the corresponding data point (i.e., High Risk Group Average 29% at 10 years) in Buyse et al (2006):

    Buyse et al. (2006): "Validation and Clinical Utility of a 70-Gene Prognostic Signature for Women With Node-Negative Breast Cancer"

    Main Page: https://academic.oup.com/jnci/article/98/17/1183/2521732/Validation-and-Clinical-Utility-of-a-70-Gene

    Free pdf available.

    Without more information, the strength of the estimate is somewhat unclear to me (e.g., How many High Risk patients were used to determine the risk estimate? What disease features are represented? etc.)

    BarredOwl

  • queenofwands
    queenofwands Member Posts: 19
    edited September 2017

    Hi all,

    I just read this entire thread and many of the links and first of all, a huge thank you to BarredOwl! I so appreciate the time you took to research and explain things. LuvToCraft, thanks to you as well for your calls to Agendia and for asking the questions that have been on my mind. I'm in a similar boat as you...low clinical risk, high risk MammaPrint result. I am also very close to zero at -0.141. My surgeon does not do the Oncotype test and spent quite a bit of time singing the praises of the MammaPrint and why. After my lumpectomy, he told me that there was a chance my results would come back high-risk but he didn't expect them to, based on everything he'd seen so far with me. I fully expected to get off easy with just the lumpectomy and radiation.

    Then came the call, and the words "So based on this, you do need chemo after all." We met with him so he could explain all the graphs on the report, but when I asked him questions about chemo, he told us those were questions for the oncologist, whom I'm meeting for the first time next week.

    From what I'm reading here though, it seems like maybe I never should have gotten this test in the first place? According to the flow chart included in the report, I am definitely low clinical risk, going by grade (2). My ER was very high at 97%, so doesn't that mean hormone therapy will be highly effective? Like you, LuvToCraft, I hate the thought of doing chemo if there will be no measurable benefit, but I also don't want to kick myself 5 or 10 years down the road if I don't do it, and then get a recurrence.

    It's really bothering me that they didn't include women who got hormone therapy but no chemo. It's very difficult to make a properly informed decision without that data.

    At least thanks to you ladies, I'll be armed with some information when I meet with the oncologist next week. Thank you again!

  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited September 2017

    The decision to have chemo is not so clear cut for some of us. It's terrifying,

    queenofwands, I was in the same exact place as you are now. I don't know your age. I'm 66 and my tumor was 9mm and no lymph invasion.

    I too, had a BS who pushed the Mammaprint test. In hindsight, I would have insisted on the Oncotype because of my low clinicals. At the time, I was so paralyzed with fear and so intimidated by my BS I just went with her recommendation for Mammaprint. Never did we discuss the implication of my being at low clinical risk. She made it sound cut and dry. Mammaprint High risk = chemo! Whoa, not so fast!

    My results came back as high risk at -0.13 just a bit over 0.

    I had a very lengthy consultation with the medical director at agendia. I learned that for me, being at low clinical/high genomic, the risk factors of chemo outweighed the benefits which was less than 2%. We discussed all the research findings and their implications.

    Looking at my mitotic rate (1), a low Ki67, and small tumor size, both my oncologist and radiologist were comfortable with my decision not to do chemo. This was a very personal and difficult decision. I read once, that there's all you can do and all you should do.

    I hesitated posting because I don't want to influence you or anyone in this difficult position either way. I also don't want anyone to second guess my decision. I fear recurrence, but there are no guarantees even with chemo.

    I completed my radiation treatments, I'm taking Arimidex with very few SEs, eat healthy, exercise regularly. and wine is saved for a special occasion. I try to take it one day at a time and view each day as a gift.

    Please feel free to PM me if you want to talk privately. I'm here to offer support to you and others as we navigate throughout this BC maze.

    I also want to thank Barred Owl and others. Through their posts and research, they helped me to put aside my fears, read the research, and to take ownership of my health and options. I can't thank them enough.

    I send love and prayers to all. God bless


  • LuvToCraft
    LuvToCraft Member Posts: 13
    edited September 2017

    Hi queenofwands,

    Please let us know what your oncologist says when you meet next week. From all my research, it appears that those in the discordant group, (low clinical, high genomic), would not benefit much from chemo. (My MammaPrint score, like yours, was also close to zero at -0.090.) From my understanding, the MammaPrint is meant to help those who may have been high clinical, but due to a low genomic risk, they could avoid chemo. Those who are low clinical/low genomic would obviously not be recommended chemo, and those with high clinical/high genomic would definitely benefit from chemo. So those of us in the discordant group (low clinical/high genomic) do not seem to benefit from having the MammaPrint done. And according to all the Journal articles, and ASCO articles, there were studies done showing not much benefit by doing chemo in this situation. My onco was ready to recommend chemo at first, but then did further research and decided that I would only benefit by perhaps 2% by doing chemo, so along with my Oncotype results, he is comfortable with no chemo. That's not to say that someone else, given a 2% benefit, would jump to do the chemo, because they want to feel they are doing everything possible. But for me, I have decided tthe benefits do not outweigh the risks. And I am hoping the Anastrozole will do what its supposed to do.

  • LuvToCraft
    LuvToCraft Member Posts: 13
    edited September 2017

    Hi Butterfly1234,

    So glad to read your post. I am in the same situation as you, low clinical risk, tumor under 2 cm, negative nodes, ER +, HER2Neg, and according to these criteria, MINDACT classified me as low clinical risk. I, like you, also had several lengthy conversations with the medical director at Agendia. She even sent me a followup email to bring to my doctor, showing the study results, as they applied to my situation. I learned, like you, that for me, being at low clinical/high genomic, also age 66, the risk factors of chemo outweighed the benefits, which were perhaps 2%. She even shared her opinion with me regarding the chemo.

    I am glad to hear you didn't just accept your BS recommendation for chemo without questioning what would be best for you. I also fear recurrence, but even my onco said that even with chemo, there are no guarantees. It will be a fear that I will live with everyday. But I eat healthy, I will get back to exercise as soon as I complete healing from the double mastectomy, and I am taking Anastrozole. I hope that will be enough.

    Had you also gone to a medical oncologist to discuss your options?

    I am so thankful for this board and all the knowledgeable people who are so helpful and willing to share their information. Bottom line, you have to be your own advocate, and make whatever decision is best for you.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2017

    Someone once made the analogy that chemo is like weed killer. I think it is more like round up.

  • LuvToCraft
    LuvToCraft Member Posts: 13
    edited September 2017

    I agree, its really not like weed killer, because unfortunately it doesn't just kill the weeds, It kills all the good grass as well.

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

    Hi queenofwands:

    Be sure to obtain copies of all test results and associated documentation for your review and records. Did you receive a BluePrint test also? The BluePrint test output is a molecular subtype classification as: Luminal-type; HER2-type; or Basal-type. Among those classified as Luminal-type, the MammaPrint risk classification (Low Risk or High Risk) is used to further subdivide Luminal-types into Low Risk Luminal-type (A) or High Risk Luminal-type (B).

    Do not hesitate to request confirmation of your "Clinical Low Risk" categorization according to MINDACT criteria from your Medical Oncologist ("MO"), as well as a discussion of the MINDACT trial findings relevant to your particular situation.

    You may also wish to inquire with your MO whether there is a multidisciplinary "Tumor Board" at your current treatment center that that would consider your case, in light of some of the remarks in the 2017 ASCO Biomarker guideline update.

    Optionally or in addition, if you have time before timely initiation of treatment (please confirm it with your team), you may wish to pursue a second opinion. Many look for an NCI-designated cancer center (confirm in-network):

    https://www.cancer.gov/research/nci-role/cancer-centers/find

    Although you may need to travel a bit, you can choose to seek any treatment locally.

    I hope your upcoming appointment is productive.

    BarredOwl

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

    For completeness, I note the following recent developments:

    (1) In the adjuvant setting, there are some recent studies relevant to those with MammaPrint "Low Risk" genomic result that have led to definition of an "ultralow risk" category.

    (2) The results of a recent exploratory subgroup analysis of MINDACT in small ("T1a" and "T1b" size), node-negative ("N0") tumors was presented at ESMO 2017, reporting a potential benefit of chemotherapy in the pT1aN0 or pT1bN0 Clinical Low Risk/Genomic High Risk subset.

    Here is a link to an ESMO Press Release which includes the text of the ESMO 2017 Abstract No. 1500_PR, Tryfonidis et al., "Not all small node negative (pT1abN0) breast cancers are similar: Outcome results from an EORTC 10041/BIG 3-04 (MINDACT) trial substudy".

    http://www.esmo.org/Press-Office/Press-Releases/Study-in-Early-Stage-Breast-Cancer-Shows-That-Even-Small-Tumours-Can-Be-Aggressive?hit=ehp

    The release mentions these node-negative tumors were "less than 1 cm" in size; however, standard tumor size definitions per AJCC criteria (7th Edition) would include tumors less than or equal to 1 cm in size (see below).

    Note that the Clinical Low Risk/Genomic High Risk group was relatively small (n = 196 patients): "196/826 (23.7%) were CL/GH."

    No information on the statistical significance of the observations is included in the abstract, although confidence intervals are provided.

    This related EORTC feature includes some perspective from the first author:

    http://www.eortc.org/news/possible-benefit-of-chemotherapy-in-aggressive-small-breast-tumours-exploratory-study-from-the-mindact-trial/

    Apparently in response to a question about whether all patients with such small, node-negative tumors should receive such testing, first author Tryfonidis replied: "We cannot draw conclusions based on this analysis" Says Tryfonidis. "It is important to mention that this is an exploratory analysis in a small subset of the total MINDACT population . . . "

    Meeting abstracts may be preliminary in nature, and the clinical implications (if any) as well as any potential caveats and limitations should be discussed with a medical oncologist. This is particularly true for an "exploratory" subgroup analysis.

    All those interested in this test should be sure to discuss with their Medical Oncologist whether such testing may provide useful information in their particular case. This should include a discussion of individual "Clinical Risk categorization per MINDACT trial criteria," and the possible outcomes of such testing in light of the MINDACT trial findings and related 2017 ASCO Biomarker guideline update.

    BarredOwl

    ____________________________________

    Tumor size abbreviations (size only):

    https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

    T1 = Tumor ≤ 20 mm in greatest dimension (includes T1mi, T1a, T1b and T1c)

    T1mi = Tumor ≤ 1 mm in greatest dimension

    T1a = Tumor > 1 mm but ≤ 5 mm in greatest dimension

    T1b = Tumor > 5 mm but ≤ 10 mm in greatest dimension

    T1c = Tumor > 10 mm but ≤ 20 mm in greatest dimension

    T2 = Tumor > 20 mm but ≤ 50 mm in greatest dimension

    T3 = Tumor > 50 mm in greatest dimension

  • queenofwands
    queenofwands Member Posts: 19
    edited September 2017

    Thank you so much for your input ladies! Butterfly1234, I'm 54 and my tumor was a little larger than yours.

    BarredOwl, thank you again for taking the time and for your thoroughness. It's been so helpful to me. Yes, I did have the BluePrint test, which came back high-risk Luminal B. I have copies of those reports. I actually am basing my understanding that I was clinical low-risk on what my surgeon told me, my earlier pathology reports (which indicated a grade 2 tumor), and the MINDACT flow chart included with the MammaPrint report. I was ER/PR positive, Her-2 negative, KI-67 17% (but 3+ intensity which seems to contradict the relatively low number). Mitotic rate was II. My tumor was 1.1 cm, I had clear margins and clear lymph nodes. It all seems so confusing and contradictory! But maybe the BluePrint trumps all the earlier results. Another thing that may be a factor is that my tumor was mixed ductal and lobular, although my surgeon said that didn't mean much and it would just be treated the same as IDC. Maybe I'm mistaken and I'm clinical high-risk as well, in which case chemo is a no-brainer.

    Lots to discuss with the oncologist on Thurs. I do have a copy of the ASCO biomarker update, which I'm going to bring with me. Depending on how the appt goes, I'll consider getting a second opinion. I'll keep you all posted.


  • Jackster51
    Jackster51 Member Posts: 357
    edited September 2017

    How do you know if you are Luminal A or B? I have no idea what I am but very curious.

  • farmerjo
    farmerjo Member Posts: 518
    edited September 2017

    I ran across this thread while perusing the forums from my phone, so please excuse any typos. My stats below pretty much explain my story. Diagnosed 2/15, was told I had luminal A and negative sentinel node biopsy, Oncotype 19, no chemo. Fast forward to 6/16, large positive node in axilla, was told it was a false negative sentinel node biopsy the first time. Had Mammoprint done on the ORIGINAL cancer specimen and I was high risk Luminal B. So had chemo albeit 18 months late.

  • farmerjo
    farmerjo Member Posts: 518
    edited September 2017

    jackster51 - Mammoprint will tell if you're A or B, if you're ER positive. Oncotype does not, unless it's changed. My surgeon originally guessed I was Luminal A and poo-pooed Mammoprint. He's no longer my physician .

  • Jackster51
    Jackster51 Member Posts: 357
    edited September 2017

    wow farmer.. so sorry to hear that happened to you. Thats crappy but I'm glad it was discovered when it was so you can attack it. I'm 5 years out and no mamoprint.. I'm done with treatment, but just curious as to how anyone knows A or B luminal... All the best to you farmer.

  • Lisey
    Lisey Member Posts: 1,053
    edited September 2017

    A low PR number as well as a higher Ki value can show Luminal B. My biopsy had 5% PR and ki-30% which led me to believe I was definitely Luminal B... but the Oncotype said I had more PR than that and the Mammaprint said I was Luminal A. Ki values are really subjective to the pathologist's eyeball test, and studies have shown wide variance with said eyeballs, so my Onc discounts them.

  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited September 2017

    I was found to be Luminal B by Mammaprint with a low KI67.

    My Ki67= 5-10%. My estrogen 90-95% and progesterone 75-85%. When I had my consult with Agendia I was told they didn't look at hormone levels. They determine subtypes by the genetic markers of the tumor.

    I was also advised that anything over I believe it was 30% + estrogen, AIs are recommended. I will have to try to find the % in my notes.





  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2017

    Wow, that is interesting, Butterfly. What led your onc to order Mammaprint for you? It sounds like Mammaprint should be used more often, even when stats look good. Mammaprint was not on my radar in 2011. Maybe it was not even available. The pathology report did not give ki67 (stupid!) but a low mitotic rate hinted it would be low. And Pr+ was very high. But I recurred after just three years. I fell into the 3%. Perhaps it was actually luminal B. Perhaps ITCs in the sentinel node was a false negative because it was ILC (ITCs not being considered a stage-changer, and ILC cells spreading more single-file). Perhaps my body did not metabolize Tamoxifen properly. If I had had Mammaprint and it showed luminal B, I would definitely have gone with oophorectomy and an aromatase inhibitor instead of tamoxifen. Tamoxifen only was advised by three oncologists as I was pre-menopausal. Oncotype high end of low risk.

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2017

    I asked my onco if I was luminal B, he said your pr was less than 1% that is what put me in a category to use AI drugs over tamoxifen and I had been post menopausal for years at dx. So the labs at my hospital don't characterise luminal A or B.

    I was 95% er positive, having both idc and ilc 1 cm lesions makes my case more complicated. My oncodx was 34 but I didn't do the recommended chemo. So far 6 years no recurrence. I would like to know what a mammaprint would have said. I called the symphony test people one of their suite of tests is the mammaprint. At the time my tumor was 3 years old they said it had been too long to make any difference.

    As far as chemo treatment, it is only valuable for a short duration after diagnosis.

    I did 4 years on AI drugs, I am still recovering from side effects. The arthritis and ringing ear is still present but getting better I think after 2 years off meds.

    I will be so happy if I never get a recurrence, the minor stiffness and ear problem is a low impact on my QOL.

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