Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Grainne, actually the stat refers to metastatic recurrence, which means that it is relative to all non-metastatic Dxes, I would assume. Non-metastatic DX does include stages 3B and 3C, which are not classified as "early stage," so you are not wrong and the risk of mets is much higher for 3B and 3C than for stage 1, for example, no question. Still and unfortunately the stat does also encompass early stage disease.
The bottom line to me, in a lot of this discussion, is that we need better stats. Not for our peace of mind, although it might help with that too, but to refine the research. I can't help but think that better stats, especially on recurrence - initial stage, type, treatment etc - would yield important clues on where to focus efforts.
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Momine, in this very long and sometimes confusing thread, your last post was absolutely spot on. There are so many types and subtypes of BC and then vast differences in stages and treatments that any statistics need to be highly specific. My MO called BC "lots of different diseases, with only the location in common".
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Optimist..I think your MO summed it up perfectly ..The only thing in common is the location !!..
I lurk here here all the time ..I am so interested in all your thoughts ..Especially as I have trouble really understanding what the statistics mean myself .
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Yes, Momine, you've hit the nail squarely on the head. I wish there were some way to pin that statement for future use!
Optimist - your MO's statement is another one for the books. Thanks for sharing it.
Edited for typo
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I remain confused!
er+ recurrences decline following the 5 year mark and carry on doing so as each year passes?
However
Over half recur post the 1st 5 years?
That doesn't seem like a whole lot of decreasing risk once the 5 years are hit? Merely that er+ recurrence happens later?
Am i missing something here? My head is spinning I read so much research and it all seems somewhat contradictory. Or am I missing something?
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Wintersocks, think of it this way: Half of recurrences happen in the first 5 years, the other half happen later, undefined. It could be 7 years after dx, 10 or 15. In other words, the other half of recurrences stretch over more years than the first half. So, after the first 5 years, the annual risk is lower than during the first 5 years.
Also, although that may seem scary, my thinking is that if it is BC that eventually kills me, if I am 80 when it happens, then so be it. Gotta die from something one day.
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Well said Momine!
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Barbe, I thought the way I stated the statistics made it clear that the 15-20% figure referred to the chances of getting my particular type of breast cancer within the totality of breast cancer types while the 2.5% figure referred to me getting that particular subtype of cancer in general so your comment was puzzling. I understand that your subtype would be a tiny fraction in the general population.
The graph that Eren to shared was from an article specifically addressing the patterns of recurrence for TNBC vs. other subtypes. The objective wasn't to provide a detailed breakdown of other non-TNBC subtypes so knowing of a single non-TNBC patient who sadly succumbed to her cancer so quickly after diagnosis doesn't negate the conclusions one can draw from the chart. There will be outliers in any statistical study.
Lyn
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Lyn I understood your post perfectly so sorry if I confused you. Like you say above it would mean my rare Papillary would be even a smaller number in the general public.
And I get the TNBC vs "all others" stats now so thanks.
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Here is a study that shows different recurrence rates and patterns for different types of BC over 10 to 12 years. The overall recurrence rate was 25%, but varies by type. Below is the link and here's a chart that provides a good visual of the patterns of recurrence (see
. I don't think there are any shockers here. This is why ER+ patients are now being encouraged to stay on hormone therapy for 10 years. http://ascopubs.org/doi/full/10.1200/jco.2012.46.1574Let's advocate for better treatments for mets and ways to keep those far-flung dormant cells dormant.
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I think its important to mention that the data for the above study came from 1988-1999. It specifies that no one in the study received Herceptin.
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debiann - excellent fact you pointed out. Also, I would assume that new drugs AIs were not available nor were patients taking Tamoxifen for 10 years. So hopefully now these stats are better.
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Actually, I don't recall Luminol A&B being around then either. Where is the ER/PR parameters mentioned? I don't really know what I'm looking at here.....
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I believe the designations were made in 2011, but were further narrowed in 2013.
Luminal A – ER positive, HER2 negative, Ki-67 low, and PR high
Luminal B (HER2 negative) – ER positive, HER2 negative, and either Ki-67 high or PR low
Luminal B (HER2 positive) – ER positive, HER2 overexpressed or amplified, any Ki-67, and any PR
HER2 positive – HER2 over-expressed or amplified, ER and PR absent
Triple Negative – ER and PR absent and HER2 negative
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Barbe, luminal B defined as Ki67> or = 14. Luminal A <14%. Is that what you meant?
Yes this was following people diagnosed between 88 and 99, before Herceptin and of course all treatments have changed over time. I hope they keep up studies showing longer term results. 5 years means nothing for some of us who are diagnosed on the younger side and have children to get to adulthood.
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One thing to note on the Luminal A / B thing.
1) I had a Ki of 35% according to the biopsy pathologist. Ki level has now been shown to be so subjective that the number is often disregarded because studies show top pathologists vary too much on eyeballing the number. One could say 5% and another 35%.2) I have low PR+ levels 5% only.
According to the stats I should be Luminal B (low PR+ and a higher Ki level).. but the Mammaprint says I'm Luminal A / Low Risk.
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Lisey, I think your example shines a light on the real utility of Mammaprint, etc because tests such as those can examine the nuances of the characteristics to make a determination of the patient's tumor classification and risk level and determine things such as your results of actually being Luminal A.
With regard to situations like Lisey mentioned where a Mammaprint test and the classification listed don't appear to be in agreement. I could be wrong, but I've gotten the impression that for purposes of grouping into research studies, oftentimes the above-mentioned characteristics (or similar) are used for standardization and classification purposes without looking at results of Mammaprint, Oncotype, etc. This could account for why patients such as yourself have differing results than how it would appear if following the above standards. This could be a way to stratify tumors especially in retrospective studies since HER2+ and TN tumors don't receive Mammaprint or Oncotype. I'm not sure that I'm explaining myself well and I'm typingon my phone.
Interestingly, there's research on Luminal C breast tumors as well. I've seen it mentioned in studies, but it's been awhile since I've read the particulars.
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Lintrollerd - it totally makes sense. On my testing, I actually called Mammaprint and talked to their chief pathologist. She said they test each tumor sample TWICE and make sure the results are the same just in case there is a variance within the tumor. Both times she confirmed I tested as low risk / luminal A. (My oncologist told me to ignore the Ki score from the beginning, but I was sure I was Luminal
. I'm very very grateful I got the Mammaprint because it helped me decide on the chemo / tamoxifen issue (since my oncotype was intermediate and Luminal B's don't do as well on Tamox as they do on AIs.) I had 3 game plans available depending on the outcome of both tests. Also, there is a Luminal TN BC that doesn't do well on the standard TN chemo regime. Agendia (mammaprint) helps to weed those out with their blueprint test.
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after reading these posts I am really concerned as to what I am. MO says not to worry about it. Can someone give me their opinion as told what I probably am. Luminal a or b? Stage 2 Grade 3, 11mm IDC. ER+ 98%. PR+ 68%. HER2- Ki67. 28%. 1 sentinel node positive. No oncotype test was done. MO said it would come back as needing chemo. And results would take awhile. Any ideas? I realize that all are different but just want someone else's opinion. Thank you and hope everyone had a happy holiday!!!
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Hi ThinkingPositive, you asked for an opinion and I am giving you one - just my personal opinion. I agree with your MO who said not to worry about what group your cancer fell into, especially post-factum. From your profile I can see you received chemo and are taking hormone therapy. That's as much as one can do, I hope you feel well about it. I have no idea what your recurrence risk is but let's assume just for this conversation that your recurrence risk is 5% if you are luminal a versus 8% if you are luminal b. How important is it for you to know those numbers that are not 100% accurate to begin with and just put you in a statistical bucket?
Like you I have no idea whether I am luminal a or b. I had no Ki67 or Oncotype or Mammaprint done. I know I have done all I could in terms of treatment when diagnosed. I based my treatment decisions on existing standards of care and my medical team's advice and expertise. Knowing whether I was luminal a or b three years ago doesn't change anything in my current treatment.
Happy holidays to all!
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Honestly Thinking Positive... I am only 5% PR and had a supposed ki of 30%. and I'm Luminal A. so your stats are much more Luminal A-ish than mine. Now, even if you are Luminal B... you did what Luminal B's should. 1) you had chemo. 2) you aren't on Tamox but an AI. Those two things were my choice if I came back as Luminal B. So even if you are Luminal B, you are doing the exact thing you should be.
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Thanks muska...every once in a while I think about it and it really bothers me and I just need someone to nudge me back. Thanks for helping!!
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Lisey, I'd like to gently challenge your assertion "you did what Luminal B's should. 1) you had chemo. 2) you aren't on Tamox but an AI. Those two things were my choice if I came back as Luminal B. So even if you are Luminal B, you are doing the exact thing you should be."
Whether any one Luminal B should or should not have chemo is not as clear cut as your statement makes it out to be. For many, it may well be the best option. For others, the probable benefits may be minimal and/or not worth the downsides. To state unequivocally that chemo is what a Luminal B should do is, I believe, overstating the case.
I really don't have a dog in this fight but I know how such statements may impact women who are relatively newly diagnosed and struggling with sorting out their treatment.
I do agree that there's no point in second-guessing any past treatment.
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Hopeful, Mammaprint would disagree with you. They basically divide the Luminals into high or low risk. Thus I was given the score: Blueprint: Luminal. Mammaprint: Low risk - Luminal A,
http://knowyourbreastcancer.com/agendia-test-suite/molecular-subtype/
Molecular Subtypes
Luminal A: These cancers are the most common breast cancer subtype at 50% – 60%. They have a good prognosis with a lower relapse rate than other subtypes. They are characterized with higher levels of estrogen receptors (ER) and treatment is mainly based on hormonal therapy.1
Luminal B: 15% – 20% of breast cancers are Luminal B. They have an increased expression of proliferation-related genes and have a higher recurrence rate and lower survival rates after relapse than Luminal-A. Studies have shown that they don't respond as well to hormonal treatment as Luminal A, but have a better response to chemotherapy in a neoadjuvant (pre-surgery) setting.1
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3467337/#!po=1.74419
Impact
In a cohort followed over 20 years, women with HER2 enriched tumors had worse survival, but interestingly, the survival curve for women with luminal A tumors continued to steadily decline after 10 years of Follow up
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Lisey, I'm NOT going to get into a debate with you.
I simply disagree with your flat-out statement that Luminal Bs SHOULD have chemo. I don't see anything that above that would lead me to conclude that, without a doubt, any and every Luminal B-type should have chemo. Treatment should always be based on guidelines, genomic tests and insight from MO on the specific patient's diagnosis and situation.
I also disagree, strongly, with giving newer and/or less experienced readers the impression that we have THE answers.
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All I'm saying is that I believe Mammaprint uses Luminal B as a means to decide risk. My oncologist told me I was Luminal A, even though all my numbers looked like B. Mammaprint would have come back 'high risk' if I was Luminal B. High risk means chemo is warranted (obviously weighing all the conditions of the patients)., I didn't say MUST.. I said that I would have had chemo, even with my melanoma history, had I come back high risk from Mammaprint.
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Regarding the Mammaprint, just wondering if there's any reason to run Blueprint if you've already come back Low Risk. That's what happened to me (my oncologist didn't order the Blueprint portion). The Mammaprint doctor told me that even without Blueprint results, I can be 99% sure I'm Luminal A. My tumor pathology seems to back that up.
I'm hesitant to incur another test expense if it's really true that I can know I'm Luminal A with 99% certainty, but is that really true? Are only 1% of Mammaprint Low Risk results for non-Luminal-A types of cancer?
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Well put, Solfeo. Thank you!
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Hi mellee:
This paper may be of interest to you, and seems to suggest that "99%" is a close approximation or turn of phrase and may not be an exact number determined empirically.
Whitworth (2014): "Chemosensitivity Predicted by BluePrint 80-Gene Functional Subtype and MammaPrint in the Prospective Neoadjuvant Breast Registry Symphony Trial (NBRST)"
http://link.springer.com/article/10.1245%2Fs10434-014-3908-y
A free PDF is available for downloading.
If I am reading it correctly, per the last two lines of Table 1, out of 365 MammaPrint "High Risk" tumors, none (0) were classified as Luminal-type A according to BluePrint. Out of 61 MammaPrint "Low Risk" tumors, 59 (96.7%) were BluePrint "Luminal-type A" and 2 (3.3%) were BluePrint "HER2-type". The sample size is not huge, so the percentages might differ somewhat if a larger cohort was examined. You could inquire with Agendia if there are any additional published studies that speak to your question and request a citation.
As far as being "certain" about Luminal A or Luminal B status, unfortunately certainty cannot be achieved. Different multiparameter gene expression profiling tests (e.g., BluePrint, PAM50) use different gene sets to approximate the "intrinsic subtypes" originally defined by Perou in 2000 (using a different methodology):
Krijgsman (2010): "A diagnostic gene profile for molecular subtyping of breast cancer associated with treatment response"
ResearchGate free PDF: https://www.researchgate.net/publication/51545570_A_diagnostic_gene_profile_for_molecular_subtyping_of_breat_cancer_associated_with_treatment_response
(X-out and scroll down to access full pdf)
Not surprisingly, when compared head to head, these subtyping tests are not fully concordant with each other. Thus, for example, it would seem more accurate to say "the tumor was classified as Luminal-type A by BluePrint/MammaPrint" than it would be to say "the tumor is Luminal A".
I am a layperson with no medical training. All information above should be confirmed with a medical oncologist to ensure receipt of accurate, current, case-specific expert medical professional advice.
BarredOwl
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