Mammaprint questions
I got my Mammaprint results back, I did not come back ultra low but did come back low. What I can't find is the scale Mammaprint uses, the range for ultra low, then low, etc.
Do any of you have that information?
Comments
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I wasn't aware that Mammaprint offered anything other than High or Low. See:
https://www.agendia.com/our-tests/mammaprint
There is a contact link on that page that might be helpful but the best thing is to contact your MO's office.Good luck.
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Well from how my MO talked w/ me about the results, it seems that they do. He'd said if I came back ultra low risk, then he'd be fine with me not taking tamoxifen (this was after I shared my strong concerns about taking it).
I found the same site you did and wondered if perhaps he was just saying that, knowing it's not possible to come back with an ultra low risk assessment. So now I want to see the scale.
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Or perhaps we was referring to the far end of the low risk scale? It doesn't sound as though he gave you a copy of your report, so that would be something to request a.s.a.p. just in the interest of having complete records of your dx. and treatment if nothing else.
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I was told it was either high or low risk....I don't know.
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Hopeful82014 I do have a scanned copy of the report. But without the high/low end of the scales, it's not all that useful.
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Found it, I think.
This article indicates that ultra-low risk is greater than or equal to 0.355. Low risk are from 0 to < 0.355 and high risk are <0.
https://ascopost.com/News/57839
And here is the full report on the study that identified that there are ultra-low risk patients within the low risk population. It appears that ultra-low risk have Ki-67 of no more than 15%, and most ultra-low risk are hormone positive and Luminal A.
https://jamanetwork.com/journals/jamaoncology/fullarticle/2634502
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Woot! Thank you, Beesie, your research powers came through!
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Glad to hear Bessie found the scales you were looking for, EDJ3! I was going to give my Google muscles a workout if not.
Did seeing the scales help with your thoughts on further treatment? Or are you still processing?
I know for me when I got my Oncotype AND Mammaprint back, I was doing a ton of "homework". Hoping your results give you some comfort and reassurance in whatever comes next for your.
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I'm just reading over those links (Thanks Beesie!) and I'm wondering, since they are based on Post-Meno women (as far as I can see) what does that mean for those of us that had Mammprints but are Pre-Meno? Hmmm curious.
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OK I have read and reread both my MammaPrint report and the studies you linked to, Beesie. Here's where I think I land, and please point out any mistakes in my reasoning.
From the ASCO Post article in the Study Details paragraph:
Risk thresholds for the 70-gene assay were ultralow (≥ 0.355), low but not ultralow (> 0, < 0.355), and high risk (< 0).
From my own MammaPrint report:
MammaPrint FFPE Result Low Risk +0.030 on a scale from -1.0 to +1.0, which in the small print says "As a group, "Low Risk" patients like those in the MammaPrint FFPE clinical validation (RASTER) study have a 1.3% (95% CI 0-3.1) . . . that their cancer will recur within 5 years (not accounting for any covariates other than the patient's MammaPrint FFPE status).
Luminal-type: +0.378 which is rounded up to +0.38, and also placed on a -1.0 to +1.0 scale.
So in both results, I look to be awfully close to ultra low. As I often say at work, not sure the (tamoxifen) juice is worth the (potential side effects) squeeze.
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Actually I'll walk this back myself. I did find a couple of PDFs on the Agendia site that lay out the scale. Based on that scale, I'm not nearly ultra low risk but nearly high risk. Which I still find baffling based on the HR status, size, stage, etc.
Here's a link to the site (scroll down about halfway to see the scale). Here's a link to the PDF of the low risk sample report, and the PDF of the high risk sample report.
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edj3, I was about to respond to your second-to-last post when I saw your most recent post. I yet haven't looked at the links you provided, but based on the numbers for the MammaPrint result, a +0.030 score is much closer to <0 (high risk) than to +0.355 (ultra low risk).
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EDJ3 -- > I'm glad you were able to find the info you needed. I'm curious, did you also have the Oncotype run? Or did your MO tell you what your calculated risk of Recurrence/METs would be without therapy?
The only reason I ask, is that even though I am low risk via MP test and borderline with my Oncotype (it was my decision to forgo chemo), my actual risk factoring in age, blah blah blah is 28-35%, so for me any therapy that can cut it down to the teens or single digits is helpful. Anyway, just something else to factor into the puzzle if you haven't already.
Can I ask you ladies, what it means that this study is based on Post Menopausal women? Does that mean Mammaprint should not be used for PreMeno? I'm now confused...a little help?
ASCO Post https://ascopost.com/News/57839
"Study Details
In a previous study, the investigators identified a MammaPrint score threshold below which no breast cancer deaths in women with node-negative disease were observed at 15 years with no systemic therapy in a series of patients with 25-year follow-up.
The current analysis involved postmenopausal women with clinically detected node-negative tumors ≤ 3 cm randomized to receive tamoxifen vs no adjuvant therapy after mastectomy or lumpectomy and radiation who were enrolled in the Stockholm tamoxifen (STO-3) trial between 1976 and 1990 (ie, before the screening era). In the trial, patients received 2 years of tamoxifen or no systemic therapy regardless of hormone receptor status; those without relapse were eligible to reconsent to further randomization to 3 additional years of tamoxifen or no further treatment. MammaPrint risk scoring was performed using formalin-fixed paraffin-embedded primary tumor blocks. Risk thresholds for the 70-gene assay were ultralow (≥ 0.355), low but not ultralow (> 0, < 0.355), and high risk (< 0)."
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And there is this article -- now I am wondering if I should send a msg to my MO and ask her about this. And if I'm not mistaken, you aren't in menopause yet are you EDJ3? Sorry if you are, hard to keep track. Maybe another question to ask yours if you're not....IDK?
https://www.frontiersin.org/articles/10.3389/fonc.2016.00241/full
Hormonal Modulation of Breast Cancer Gene Expression: Implications for Intrinsic Subtyping in Premenopausal Women
"Clinics are increasingly adopting gene-expression profiling to diagnose breast cancer subtype, providing an intrinsic, molecular portrait of the tumor. For example, the PAM50-based Prosigna test quantifies expression of 50 key genes to classify breast cancer subtype, and this method of classification has been demonstrated to be superior over traditional immunohistochemical methods that detect proteins, to predict risk of disease recurrence. However, these tests were largely developed and validated using breast cancer samples from postmenopausal women. Thus, the accuracy of such tests has not been explored in the context of the hormonal fluctuations in estrogen and progesterone that occur during the menstrual cycle in premenopausal women. Concordance between traditional methods of subtyping and the new tests in premenopausal women is likely to depend on the stage of the menstrual cycle at which the tissue sample is taken and the relative effect of hormones on expression of genes versus proteins. The lack of knowledge around the effect of fluctuating estrogen and progesterone on gene expression in breast cancer patients raises serious concerns for intrinsic subtyping in premenopausal women, which comprise about 25% of breast cancer diagnoses. Further research on the impact of the menstrual cycle on intrinsic breast cancer profiling is required if premenopausal women are to benefit from the new technology of intrinsic subtyping."
Ok..15 mins later, found an answer I think.....if anyone is interested.
So basically, it seems to me from reading, that the Oncotype DOES factor in ER PR readings etc into their genome testing, so if the sample is from a Pre-meno patient, some of those readings would fluctuate during the month based on their cycle and thereby possibly (???) cause a misinterpretation? While it seems that the Mammaprint DOES NOT (last sentence of this screen shot) include those variable elements into their profile, so as the last sentence of the screen shot says, " It is likely that Mammaprint is appropriate for dianosing BC in premenopausal women."
Hmmm, now I'm even more thankful that I had both run. Ugggh.
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I asked about the Oncotype test first when I last saw my MO. He doesn't use it, but does use the MammaPrint test.
Regarding menopause, I honestly had no idea if I were in it still or not. I had my uterus and left ovary removed when I was 43 b/c of very heavy, never ending periods. Tests showed I was a very high estrogen producer. When I was 55, I had a hot flash and thought oh OK, guess I'm in menopause. But it was such a none event for me, with the exception of insomnia which I'd never ever had before, and the hot flashes were more warm spells that I didn't know. But the blood work my MO ran in April showed I'm postmenopausal. So I guess I blinked and missed it?
Have you guys been reading about the studies just out indicating a link between no/low estrogen and Alzheimer's? I'm still on my first cup of coffee so not up to digging out the serious studies but this might get you started. With that in mind, I'm wondering how to balance all of these competing risks. Plus I flat don't want any of the tamoxifen side effects. There, I said it.
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I thought that the Mammaprint high/low designation assumed hormone therapy as part of treatment when determining risk, is that not correct? I thought I was told that in the office or read it in on the agendia site but not sure now. Memories from that stressful time are blurry.
I honestly wouldn't worry about the premenopausal thing with that study... remember Mammaprint is newer to the US but has been used in Europe for much much longer.
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Spoonie,
The screenshot you included in your post does say that Mammaprint was validated in studies that included pre-menopausal women. Here is the chart that lists those studies:
As for why the "ultra low risk" study was only done on post-menopausal women, I would guess it's because it's established that age is a factor that affects risk, and all other things being equal, older women have a lower risk. Therefore since this appears to have been a preliminary study to see if such a thing as an 'ultra low risk' cohort exists, it makes sense to start off by looking at the population group that is most likely to fall into that cohort. This doesn't mean that there might not also be pre-menopausal women who are ultra low risk, but this would have to be evaluated separately and I would guess that the score that puts someone into the ultra low risk category might be higher for pre-menopausal than it is for post-menopausal.
We see this with the Oncotype test, where there are different recurrence risk charts for those over age 50 versus those who are 50 or younger. This goes even further with the Oncotype RSPC (Recurrence Score Pathology Clinical) computer program, which some MOs use (mine does), that incorporates age, tumor size and tumor grade together with the Oncotype score, to come out with a more personalized recurrence risk. Age is a significant factor in this model. Although all over 50s are given the same recurrence risk based on their Oncotype score, using this model, at an Oncotype score of 35 (for example), someone who is 65 will have a lower risk of mets than someone who is 51, and someone who is 80 will have a lower risk still. I would assume the same is true for those who are younger, with someone who is 35 having a higher risk than someone who is 49, all other things being equal.
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Thank you so much Spoonie and Beesie.
I'm having a very hard time tolerating the tamoxifen. I'm currently skeptical if it's actually compatible with me earning a living that provides health insurance for the next ten years. I have an appointment with my MO next week.
I'm thinking to ask her to run mammaprint (I only had oncotype) and use that as part of my evaluation of whether to stay on tamoxifen but a lower dose, try OS either with or without AI (my reading of this implies that OS without AI might be appropriate if my mammaprint actually came back ultra low risk), or go off completely. Does that make sense?
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Thanks Beesie for the extra clarification, much appreciated and helpful. I think I kind of figured that out last night but didn't explain it very well.
What I came away with about the two tests, (sorry for being off topic EDJ3) is that like you said pre-menopausal women were used in both studies but there is a big difference in what they actually test/factor in to the rating and how it's possible (with Oncotype) that results could be different based on what time of the month a premeno patient has their biopsy and/or surgical removal of the cancer/tissue that will be tested.
According to https://www.frontiersin.org/articles/10.3389/fonc.2016.00241/full,
"Despite the known role of estrogen and progesterone on the function of the breast and on breast cancer risk, the effect of menstrual cycling on breast tumors remains unknown. In support of the possibility that menstrual cycle critically affects the gene-expression profile of breast cancers, a recent in vitro study has suggested that the combination of estrogen and progesterone results in the switching from a Luminal A to Basal-like intrinsic subtype in breast cancer cells, and increases the Oncotype DX Recurrence Score (43) compared to estrogen treatment alone. Tests that utilize gene expression profiling in breast cancer classification were developed and validated from studies predominantly in postmenopausal women, and there is a scarcity of research on how applicable these biomarkers are to premenopausal women, and the extent to which this impacts on treatment response. It is important to understand how hormonal fluctuations affect predictive and prognostic biomarkers, to provide premenopausal women with the optimal treatment for their individual cancer.Conclusion
Breast cancer clinics are increasingly adopting gene expression profiling to subtype tumors and identify the best therapies. However, despite their availability to young women, such tests were largely developed and validated in postmenopausal women – patients in whom fluctuations in estrogen and progesterone associated with the menstrual cycle are absent. Yet, these hormones are highly likely to affect breast cancer gene expression in premenopausal women – and the diagnosis and treatment trajectories that stem from its measurement – could fundamentally depend on a patient's menstrual cycle stage at the time of tissue sampling. Leading diagnostic tests harness intrinsic subtyping of breast cancers, but whether these tests are accurate for premenopausal women remains a startlingly open question. Quite simply, young women may be at risk of receiving inaccurate subtype diagnoses; with ramifications spanning inaccurate prognoses, suboptimal and unnecessary treatments, and reduced survival."
My take away, which maybe I misunderstand, is that Oncotype DOES factor in ER PR readings etc into their genome testing/recurrence scoring, so if the sample is from a Pre-meno patient, some of those readings would fluctuate during the month based on their cycle and thereby possibly cause a misinterpretation. While it seems that the Mammaprint DOES NOT include those variable elements into their profile, so as that article states, therefore " It is likely that Mammaprint is appropriate for diagnosing BC in premenopausal women.". So again my interpretation - Mammaprint is likely to be more accurate for premeno women vs Oncotype. Interesting and something I'll be poking my Mos brain about at our next appt just to learn more.
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Edj3 - That sure sounds like a confusing journey for your body. I'm sorry about the need for early surgery along the way, but hopefully it helped in the long run. Good news that menopause wasn't hellish for you. It's nice to see that on the boards, to be sure. I haven't gotten around to reading up on the long-term affects on lack of estrogen in our bodies for more years than average. Thanks for giving me a place to start next time I feel like diving into some "homework". I wish things came with less balancing acts to carry out, who wants to worry about cancer and heart issues and Alzhiemers in addition? Ugggh. But at least we are being proactive and doing what we can know to hopefully prevent that from happening. If you come upon any other great links/studies, please let me know. I'll add them to my reading list.
Salamandra -- I think that totally makes sense. I hope your MO is open to running the additional test for you. ONe thing I'll say about the adventure to get mine was that it took some hoop jumping on my end. My original MO was not open to running it at first, so I told her honestly that if I was as borderline with Onco and having lost my brother to cancer I wanted to be sure I was making the right choices. I didn't want to regret not choosing chemo, so I wanted a second test opinion. She warned me that insurance would likely not pay for it (not true). I called the Oncotype website myself and talked to them, and they take many insurances. That MO finally relented and put in an order. Soooo be prepared that they may not be open to it, but IMO you have the right to a second test opinion just as much as a MO second opinion. Here's hoping your MO is on board and that your Mammaprint confirms your Oncotype. Keep us posted.
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Spoonie77, I'm glad for the additional questions--I think the more information we can share, the better. I can't have been the only one wondering about how the MammaPrint scale works, and your questions about whether it's suitable for premenopausal women is absolutely on topic IMO.
WRT to having my uterus etc. out, the only reason I had the left ovary removed was because I'd had a very weird tubal pregnancy that migrated back into the ovary years ago, and then the Fallopian tube got all wrapped up around it. My surgeon at the time was able to save the ovary but I had a lot of scar tissue and ongoing pain as a result. So when I had my uterus out, I said please take the left ovary. That surgeon also wanted to take the right ovary but I said no, it had never done me any wrong. So I didn't get thrust into menopause overnight.
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