TRIPLE POSITIVE GROUP
Comments
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Hap,
The MammaPrint results identified me as high risk.
If I finished my chemo and my oral estrogen blocker, I have a 94.6% opportunity for no recurrence.
Make sense?
Vicky
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Hap,
It did not specify a treatment plan. Only that with chemo and finishing all treatment what my non recurrence would be.
Vick
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Vicky, I may have missed it in the emails, but what treatment plan did you follow? Chemo or no chemo? I was interested in doing BluePrint as well to get the subtyping in case I had the one that responds better to hormones than to Herceptin, but my MO said that since I was such as strong positive for HER2, I should go with Herceptin & Taxol. Now I'm wondering if I should get the test and/or a second opinion.
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lita - I replaced the link in the other post, but here it is as well. This link should work, but this is from the Journal of the NCI, Her2+ Breast Cancer, Intrinsic Subtypes, and Tailoring Therpay:
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hap - you aren't likely going to see a subtype written anywhere unless you have genomic testing done. Some oncologists will hazard a guess about your subtype based on other pathological criteria, such as Ki67%, grade, and percentage of hormonal receptors. An example would be a low grade, node negative, strongly ER+ but Her2- is likely a Luminal A. Here is a breakdown of molecular subtype - St. Gallen, which is who did the first subtype classification. Subtype definitions can vary a bit by source.
Luminal A - ER+ and PR+ at least at 20%, Her2-, low Ki67%
Luminal B - ER+, PR+ at less than 20%, Her2-, high Ki67%
Luminal B/Her2 - ER+ and/or PR+, Her2+, any Ki67%
Her2+(non luminal) - ER-, PR-, Her2+, any Ki67%
Triple Negative - ER-, PR-, Her2-, any Ki67%
I am classified by Mammaprint as ERBB2 subtype, so Her2+, but I was strongly ER+ and weakly PR+, and a crazy high Ki67% - so I fit the St. Gallen model of Luminal B/Her2+
I think it is important to note that none of the current genomic assay tests will direct you to a specific chemo regimen that works best on your tumor - we are not yet at that level of personalized medicine. Almost all Her2+ (those that test truly Her2+ on IHC or FISH) will come back from Mammaprint as "high recurrence" and the recurrence score will be based on finishing "treatment" whatever that consists of - non-specifically.
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SpecialK - The article was very interesting - thanks so much for sharing it!
And your Mammaprint results of HER2-driven vs placement in the Luminal B subtype is exactly the reason that I want those results. In various studies I've read the recurrence/survival stats are different for each type. Ostensibly I'm Luminal B because I'm highly ER/PR positive but it's also possible I'm HER2-driven or even Luminal A.
It feels like we're on the cusp of so much knowledge about breast cancer but not close enough to let early results and hypotheses change treatment. But I imagine this is the case with much of medical science at any point in time.
'Tis a conundrum.
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Coach - I'm curious - how do your Mammaprint results compare to Predict UK?
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HapB - this is an example of how subtypes are being studied to help determine treatment needs:
In case the link doesn't work, the title of the article is "Distinct triple-positive subtypes identified in breast cancer." It was published in the "Oncology Nurse Advisor" and written by Kathy Boltz, PhD.
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I did Taxotere, Carboplatin, Herceptin for 6 rounds August thur December 2016. Then Herceptin for the rest of the year thru August 2017. 18 rounds total. Finished 14 August.
Lita19901 I don't know about the comparison. Maybe Special K can give insight. She is the expert on this. Way beyond my knowledge.
Vicky
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Coach - sorry, I was assuming you had plugged your information into the Predict BC calculator website. It's really fascinating, at least to this statistic nut.
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Hap - My MO's goal is to kill the cancer so it doesn't kill me. My goal is to stay alive while still being able to have a life after treatment. Sometimes these goals are in conflict.
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SpecialK, I have now red HER2-Positive Breast Cancer, Intrinsic Subtypes, and Tailoring Therapy and I do not know whether I just know so little about it or if my mind does not work properly these days, but what was the statement? How much Her2+ do you need to be so you can be classified as Her2-E? I double checked with another oncologist, my score (IHC) is 7, 13,8 number of copies. Am I Luminal B? Or am I overexpressed Her2 even though I am both ER/PR+? Do I benefit from hormonal therapy? Trastuzumab? And what does mean: it is quite possible that copy number could drive the expression of genes that modify trastuzumab efficasy? Just how you interpret it for example.
I mean I am writing all this down because I will meet a new oncologist on Wend but in case I have better understanding I will be able to pose the correct questions.
Thank you in advance, Cherry
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Lita, is it possible to be Luminal A if you are Her2 positive?
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lita, I red the article and it says: The study noted that combining trastuzumab and pertuzumab for dual HER2-inhibition improved pathological complete response rates in all patients, except patients classified as basal-type by BluePrint and as HER2-positive/ER-negative by IHC/FISH.
Why would Herceptin work better for those who are ER+/PR+/Her2 compared with HER2-positive/ER-negative? I thought it was the other way around.
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Good question Cherry-sw. After 6 rounds of TCHP with a PFC and upon finishing the 12 months of Herceptin, my chance of recurrence was said to be 10 to 15%. I plan to revisit this topic again. Perhaps the percentage of DFS goes up at the 5 year mark while having done an anti-hormonal therapy. A giant flow chart with footnotes for triple positive BC would be nice. If this, then that. When I was full of steroids and reading this message board late at night, I would take notes and have to keep lists of questions. You learn something new everyday.
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Suburbs, you are so right about learning. I have to start cathegorizing this information. Unfortunately, I only have my work computer, have to buy a new one
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Cherry - According to a HER2 researcher who was nice enough to answer my questions, yes, it is possible to be HER2 positive and Luminal A, even with a K1-67 of 25 like mine. I really thought he was in lala land until the article SpecialK posted indicated the same thing.
But the percentage is low and so the issue of possible vs. probable comes into play.
Medical treatment is based on current knowledge and these are relatively early days for subtype research. It's possible that in 5 years they'll discover that we might not have needed some arm of treatment. But if we've had it and survived, will we really care, as long as the treatment didn't cause difficult and long term problems for us?
Regarding the article I posted about HER2 subtype research I was just using that as an example of the type of studies that are currently in the works.
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cherry - I believe that the basic message of the article was that for Luminal B folks the addition of Perjeta was helpful, and that there is a further delineation of subtypes for those who test Her2 on IHC or FISH.
This is not in the article, but I believe the increased percentages of help provided by adjuvent Perjeta are pretty slim per the Aphinity Phase II trial, and further the ER-/PR-/Her2+ subset is seen as the most aggressive combination - both due to the aggressiveness of the Her2+ aspect, and the fact that there is no anti-hormonal assistance for these patients that provides protection ongoing.
Part of the issue for triple positives and recurrence is the question of what is driving any recurrence - is it the Her2+ part or the ER+ part. Most Her2+ driven recurrences happen somewhat quickly, within 2 years, from treatment, or less. Most ER+ driven recurrences happen tend to happen within the 5 year mark - so potentially could be concurrent with Her2+ if within the 2 year mark, but the risk of recurrence for ER+ never goes away beyond 5 years, just lessens. Additionally, there is the question of whether or not Tamoxifen is as effective for those who express Her2+, and whether it or the three aromatase inhibitor drugs, work effectively on us as individuals. This is tied up in how one metabolizes these drugs, and the genetic characteristics of each tumor. At the 5 year mark I had another assay done on my original tumor - the Breast Cancer Index test by Biotheranostics. This assay indicated that I had a high risk of recurrence coupled with a low benefit from aromatase inhibitors. This combination happens in only 10% of tumors tested by this type of assay. Because this test was done on my original tumor it means that I was most likely receiving low benefit all along that 5 year period. I asked my MO at that point for a PET scan to take a look at what my current situation, and while it came back bi-laterally abnormal on the chest (long story - not cancer, but 4 different types of inflammatory process remedied by an already scheduled reconstruction surgery the following week), there was NED anywhere else visualized by the scan.
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Hmmm.....this % recurrence debate seems to be occurring among ladies who are Stages I and II. As a Stage III person, I just did "the works" -- chemo, surgery, radiation, a year of Herceptin, and now an AI. I didn't feel like I had much choice about treatment, and never worried whether I was Luminal A or B.
There were 30 women on my chemo board in July 2014. One has passed (she was Stage IV when she began chemo in July 2014). Three have recurred and are now Stage IV. All three were Stage III, and two of them were ER-/PR-/HER2+. No one who was Stage I or II has recurred (yet).
Of course, breast cancer patients who are Stages I and II do recur, but it is more unlikely. And, of course, you want to make the best treatment decisions for yourselves. But, all we can do is reduce the risks of recurrence, and none of us can be sure what our future holds.
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HapB, I want to process all the information but my brain is not as effective as it used to. Today I was about to make a salad dressing, a new recipe, five ingredients. Usually I look at the picture once or twice and I remember it, not the list, the picture. Not for a week but long enough to make a dressing. Today I went back to my computer several times, was just amazed that could not remember how much and of what. Cherry
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somebody i know er +, her2 -,with affected lynph nodes, who opted out of anti hormonals amd went to an immunologist instead . she had a blood test and sent the sample to Greece . appparently her cancer cells were "high", so she is receiving vit.c infusion to supposedly "kill cancer cells"... i dont know what blood test that was ... i was thinking tumor markers but why send it to Greece?...
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SpecialK, thank you, I just wrote down three questions for my meeting on Wednesday based on your answer. The way you explain I always understand everything. The first oncologist I met told me that they do not do any delineation in terms of Luminal B or Her2 overexpression. When it comes to Her2, he said, they treat it as Her2, the only difference is that they have hormonal treatment for those who are ER/PR+. Which is correct but I wanted to discuss the Luminal subtypes which he clearly did not. Cherry
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Lita, I am mostly worried that I am not getting enough treatment. I have very high Ki-67 and I red about a Japanese study that shows correlation between Ki-67 and recurrence when over 45% had the highest recurrence risk. So, I just think shall TP Grade 3 with high expression of Her2 have the same treatment as TP Grade 1-2 with moderate expression of Her2 (those who are Luminal
? If chemo kills the cells that are dividing at the moment the question is wouldn't it be better to give those with high Ki-67 a stronger chemo? The second oncologist I met told me that they do not know, they maybe are over-treating me already. In that case they are definitely over-treating those with Luminal B type. But I would rather go over than under. I also asked about why they choose Taxol and Herceptin as a standard treatment and it turns that it all comes from that study conducted by Dana Farber, 406 patients etc. No other studies similar studies have been done after that. And the results they have published are from 2014. When I asked the oncologist, the second one I met, about whether the figures are the same as per 2017, she told me that some people do continue to recur in this study but no they did not publish any recent results. This is what I remember of our conversation even though I cannot rely on my memory right now, or if I got it right. This study does not either make any differentiation on Ki-67, of those who recurred what characteristics did their tumor had? I know I am trying too hard and the significance of Ki-67 is debatable but there are studies, and I cannot help it than just reading those. Cherry -
ElaineTherese, do you mean that you would not worry about recurrence if you were Stage 1 or 2?
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Hap, Elaine - I also think the point in time one is diagnosed with BC influences one's viewpoint. We read what's current, and current research is somewhat fixated on subtypes and what part they play in treatment response. Personally, I wish research would also focus on finding treatment without the toxic side effects!
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Cherry,
I think we all worry about recurrence. If I were Stage I, I would worry but would do so from the perspective that my chances of recurrence were relatively small. That said, I can't tell you how much to worry because you are you and you may have a different level of anxiety than I do.
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Cherry - I'm wondering if age influences our concerns about recurrence vs fear of treatment effects on quality of life. When I was your age I also had an 11 year old and I'm quite sure I would have said screw the side effects, give me the Taxol! The idea of not being around to watch him grow up would have been intolerable and I would have paid any price to have that.
But now it's different. I thought I had at least a good 10 years before I would start feeling the effects of age on what I love to do. I expected those ten good years, and I want them! I don't want to spend what's left of my life dealing with the aftermath of chemotherapy. What I reallywant is to wave my magic wand and have this all just... disappear..
The point you raise about not knowing about the K1-67 level of the recurrences is a good one. But it is also possible - and perhaps likely - that the study grouped people with a variety of variables that makes the result less meaningful to someone with your type of BC. My breast care navigator told me to steer clear of general Her2+ stats for that very reason.
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Lita, all you just said, true, true and true. I told my mom and my husband that when I think about what I am facing I get sad and devastated but realize that if everything goes wrong this is not much I can do. I had my life, it was sometimes good and sometimes not that much, I experienced many good things and I am grateful.. My eldest daughter is a grown-up, still young but in university, she is not small but her sister.. and this is when I get a complete cognitive dissonance, that it is so wrong, it is a catastrophe, it cannot happen, give me anything I will take it. I walked in the forest today just crying and thinking about this. I cannot any longer think of how I will be feeling later in life, this dx has turned my life upside down. Cherry
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Cherry, my heart goes out to you. It's unfair that any of us have go through this but it's especially unfair for younger women.
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ElaineTherese, the statistics cannot apply to one particular person, a smaller chance is not making it any easier for a person who has recurred. And nobody knows who will and who won't. And it is very individual, some people have large tumors, nodes affected and never recur and some people have small tumors and no nodes and still recur and once again nobody knows. Because nobody knows how one's body will response to the treatment and how the cells will behave, they have emerged somehow and lured the immune system, this is a highly complicated process and yet they are there, this is serious stuff we are dealing with. I probably did not live the most healthy life before bc but I do not think that I mistreated my body that much it could not manage this illness. I still have not come to terms with my diagnosis. Cherry
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