Long term "high oncotype test" survivors
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I am really happy to read this thread and see people doing well! I got my IDC Oncotype yesterday and it is 61. That shook me.
Just -- thankful that you're here, thankful for this community. And hi.
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jamiens, do you know your er percentage? You might want to ask about AI drugs for prevention. You could try them after chemo regiment.
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My Oncotype ER score is 8.6 positive. The percentages in my two biopsies were 98% and 93%.
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Jamiens. My ER score was 9.0 and PR 5.7 (only slightly positive). And like you, I had a high IHC score on ER of 95%. My PR was only 5%. My oncoscore was 39. And while listing, my Her2 Score was 7.9. Ki67 was mentioned on first biopsy at 60%. Could my only slightly positive PR have given me a 39 over your 61. No doubt, that is a high one, but I think IOUgirl is that high and has been posting here 10 years or so.
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My oncotype score was 57, ER+ at 90%. It is scary, but I am doing all I can to prevent recurrence!
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Logang - 0 of 31 nodes? Did they not do a SNB? Strange how you, jamiens and myself all had IHC ER+ in the 90's, but presumably not so good on oncoscoring, yielding a high score. I've never gotten a good explanation for this discrepancy.
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Yes my er was 95% and pr less than 1%, oncodx was 34, grade 2 mitotic rate was 1, others were both 2, Nottingham score of 5 and 6 for my ilc and idc tumors. It's been 5 years, i almost finished the whole AI treatment. I have mild to moderate arthritis in my neck and spine I think permanent side effects. I think I got off easy compared to others.
Usually only a couple nodes taken on sentinel node biopsy.
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9 hours ago Logang wrote:
My oncotype score was 57, ER+ at 90%. It is scary, but I am doing all I can to prevent recurrence!
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Yes! That is where I've "landed" in my head. It's a big number but it just lets me know to be aggressive in treatment. It actually removes any gray area of "should I or shouldn't I"!
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Morning,
I was diagnosed 2 years ago with node negative, ER+, Oncotype RS 39. I recently reviewed the literature on the probability of surviving without distant recurrence both at diagnosis and at various points in time after diagnosis and adjuvant treatment. I focused on subgroups of women with high RS. (I've tried to format the information so you can read it easily, but the board's text editor messes it up. PM me if you're interested and I'll e-mail you the slides.)
One of the initial Oncotype studies is this one:
Paik et al JCO 2008
-Survival to 10 years among node negative, ER+.
-NSABP B-20 (5 years tamoxifen, randomize to chemotherapy).
-N(RS high-no chemo)=47. N(RS high-chemo)=117
P 10-year survival No chemo Chemo
Year 0 62% 89%
Year 2 67% 95%
Year 4 83% 95%
Year 6 94% 98%
Year 8 97% 98%
Note the differences in the 10-year risk of distant recurrence between those who received chemo and those who didn't 89% v 62%. Everyone was assigned 5 years of tamoxifen. Note also that among those receiving chemo, the few recurrences that did occur mostly did so within the first 2 years. After year 2, the probability of surviving to year 10 without metastatic disease was 95% in this group of women.
The same group recently published another paper, noted previously in this thread, in which they looked at survival out to 15 years, stratified by the Oncotype ER score. This analysis was an effort to determine which women could benefit from more then 5 years of hormonal therapy.
Wolmark et al. JCO 2016
-Survival to 15 years among node negative, ER+, high recurrence score.
-NSABP B-14 trial (e.g., no chemotherapy).
-5 years of tamoxifen.
-By ER score (<9.1 cutoff for low v high).
-N(low ER score)=55. N(high ER score)=126.
P 15-year survival High ER Low ER
Year 0 66% 67%
Year 5 85% 94%
Year 10 97% 100%
The obvious problem with this study is that it was done with an earlier cohort of women who don't appear to have received chemo. So both groups have a high risk of distant recurrence by year 15 (66% and 67%). Among the low ER group, though, most of the recurrences, again, occur early. By year 5, these women have a 94% chance of surviving another 10 years without metastatic disease compared with 85% among women in the high ER group. Of course, it would be helpful if the same study were conducted using the B-20 group that received chemo.
The numbers I show here are ones I put together after reading these studies. They may help you put your own risk into context. I've also taken a look at the some of the recent studies showing long-term risk of recurrence (up to 20 years) for ER+ women overall. From what I can tell, they mostly lump a lot of women together, without stratifying by receipt of chemo, so it's hard to tell how useful extended hormonal therapy would be for those of us on this thread. I'd like to hear your thoughts about that, especially if you are aware of any clinical trial data relevant to our cohort.
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notoday,
Well I am one oncodx 34, no chemo no recurrence 5 years out.
Loral is another oncodx no chemo I believe no recurrence.
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My right Axillary lymph nodes showed abnormal on breast MRI. I was scheduled for the SNB, but my surgeon said they didn't look or feel normal so he took them all. All 31 nodes were clear. I think being grade 3 jacks up the oncotype score too!
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Nottoday - thanks for your analysis. Could you provide links to your articles possibly?
I am confused about your statement in second to last paragraph:
The obvious problem with this study is that it was done with an earlier cohort of women who don't appear to have received chemo. So both groups have a high risk of distant recurrence by year 15 (66% and 67%).
Other than that, you and I have the same exact RS score of 39. First one I've met.
I was dx 11/11/11, surgery on 1/17, intense chemo, brca2+. Still NED. It was my understanding the high part of our risk (having a high RS) is front loaded and after 5 years, our odds for recurrence become more like the rest of the Stage 1 community, though oncoscoring uses a 10 year horizon. This was read elsewhere.I was recently researching Glioblastoma multiforme (a friend has it) and understanding how fast this type of tumor grows. Breast and colon were mentioned as slow growers, though we would have faster growers within the spectrum of slow growers. What hit home to me that as fast as our tumors did grow, it was measured in years, not months (as glioblastomas can be). So any mets would take years too. I happen to see my MO yesterday and asked her if my original tumor could have taken 5 years to become detectable and she totally disagreed, it would less than that, so likewise, would I have expected a Met to show up in less than 5 years too? The journal article I read on tumor growth rates contended tumors do not "go into hiding" i.e. dormancy, and other than possible mutation to a more virulent form, tend to maintain their original growth rates. I took this as good news, being 5 years out. I suppose I'm making quite a few assumptions here, but this congeals with the idea our odds become more like a Grade 1 after 5 years. What do you all think?
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Quinn I tried to start a new thread roll call on high oncodx that chose no chemo. I cant find it can you?
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I also don't see this thread updated on active topics.
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Meow - if you started it then you should see it in a list of your own posts?
I put any thread that I want to follow in "favorites" or else I never see it again.
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Meow - I've just noticed that my favorites are not updating for newer posts. Maybe time for the Mods to get a report?
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Hi Meow,
Yes, the two works I cited from Paik and Wolmark show recurrence risks for women with high RS who did not choose chemo. Wolmark, using an earlier cohort of women, shows about a 33% risk of developing metastatic disease for this group over 15 years, or 33 in every 100 women who forego chemotherapy. Pail, based on a different cohort, estimated that 38 out of every 100 women with high RS who forego chemo will develop metastatic disease in 10 years, compared with 11 of every 100 women who undergo chemo (and 5 years of tamoxifen in both groups).
So, it's wonderful that you are part of the majority of women who do not develop a recurrence despite no chemo.
High RS women who are just being diagnosed will want to weigh the risks and the benefits of chemo.
QuinnCat, the comment that you cite refers to the Wolmark study that looked at the risk of recurrence in what the investigators categorized as a high v low ER score, with the score being determined by Oncotype DX. However, as I understand their data, none of these women received chemo, so for the majority of high RS women who did receive chemo, it's hard to know how well their results translate to us.
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Meow...Yes 4 years no recurrence, but I'm still taking Tamoxifen....
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does a higher er + % mean a higher oncotype score?? It seems like recent posts have high er % and pretty high oncotype scores. I didn't have the test done just went on to chemo since 1 node positive. My MO said it would probsnly come back high. What determines whether the score is going to be high or not
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ThinkingPositive - The oncotype score is based on a calculation which includes gene expression values for a number of genes, including ER. Things like HER2 expression make the score higher, while ER and PR expression drive the number down. The thing to remember, though, is that ER% from the pathology report tells you how many cells are ER positive, but the expression of the ER gene in each cell may still be low. Hope this helps!0
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grandma3x said: "The thing to remember, though, is that ER% from the pathology report tells you how many cells are ER positive, but the expression of the ER gene in each cell may still be low. Hope this helps!"
grandma3x - is this the answer that some of us have been searching for (me for 5 years). Sorry if this sounds impolite, but do you know this for a fact? Is this reason why there are sometimes conflicts in IHC versus Oncoscoring for ER+????
ThinkingPositive & grandma3x High ER+ usually means a lower Oncoscore (same with PR+), but ER+ as measured by the Oncotyping way of measuring it, not IHC. Some of us were lamenting that our IHC scores were in the 90's for ER+, but only 8-9 on the Oncoscoring scale (which is sort of middling, though positive). i.e. they did not agree.
And while Her2+ will give you a higher score, the cohort did not include Her2+, so the recurrence numbers are not meaningful, and given Herceptin is available for Her2+. MO's will not even order the Oncoscore for Her2+ patients, though sometimes it happens because the pre-surgical biopsy does not match the surgical biopsy.
There was a spreadsheet roaming around BCO for awhile that would yield a "poor man's" oncoscore. It included Ki67 percentage, ER+ (IHC) percentage, PR+ (IHC) percentage and darn, was it grade? I cannot remember the fourth item.
Grandma3x, most grade 3's will end up scoring in the High range of the oncoscore, though surprisingly, not always. What a conundrum that is!
All of this being said with a score of 39 and 5 years out, so I've been out of the loop for awhile.
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quinncat... so with my stats 98% er+ 68% pr+ ki67 28% grade 3 her2- It's most likely that my MO was correct in that my oncotype would come back high. I often always thought in the back of my mind he didn't want me to know how high so that I wouldn't worry. Bizarre crazy thought huh?? I have many of those kinds of thoughts lately. 2 years out from diagnosis and doing well but the thoughts seem to come now more frequently.
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Quinncat - yes, this is how it works (sorry if I am oversimplifying): every cell has DNA, which is like a master blueprint for all the cells in your body. DNA is a string of genes, where each gene is a code for a single protein. The reason why skin cells are different from brain cells or muscle cells or bone cells is because the genes are transcribed or expressed in different amounts in each cell. The gene is transcribed (copied) in the form of RNA, and the amount of transcribed RNA in a cell can be measured pretty accurately. This is what the Oncotype test does. Each RNA, representing a different gene, is then translated by ribosomes into a protein and the proteins in a cell do the work, like transport nutrients in and out. The estrogen receptor (ER) is a protein that binds estrogen. When this happens it changes its shape, sending a signal to activate other proteins resulting in cell growth. The pathologist determines ER percent by using a stain for ER and then counts the proportion of cells that stain positive.
Since they are measuring two different things - the amount of RNA for the ER gene in the cell vs the number of cells that stain positive for ER, you can have a high ER% on pathology but a mid-range score for ER on that sliding scale on the Oncotype report.
Quinncat - no worries about being impolite! The description I wrote above is my understanding of how things work. I have a PhD in biochemistry, but I work on microbes, so if I am wrong on something I'm sure someone will come along and correct me!0 -
GrandmaX3....thanks for this info. So if a tumor is 99% ER positive on IHC, meaning 99% of the cells have estrogen receptors, but lower by oncotype, does that mean that some of those receptors aren't active? Like, only some are actively using estrogen to divide and grow? Still confused what this all means.
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grandma3x - thank you thank you! I cannot tell you how many times I have asked my MO this particular question and how many times I have seen it pondered here, and never getting the answer, let alone the science. (I have just enough upper division biology and microbiology coursework to somewhat grasp what you are saying.)
So it would appear that my 95% ER is not at all contradicted by my middling score on the Oncotest and that ER blockers would be very effective, or at least, in order? My MO proposes I stay on them longer than 5 years and I am within a year of that.
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ThinkingPositive
"quinncat... so with my stats 98% er+ 68% pr+ ki67 28% grade 3 her2- It's most likely that my MO was correct in that my oncotype would come back high."
I can only reply with this. My ER 95% (slightly worse than yours), Ki67 60% (a lot worse than yours, though a particular range might be better suited, rather than absolute higher or lower, for chemo per one journal article I read - 55% ideal for chemo effectiveness - does Oncoscoring take than into effect -do not know - though I doubt it as I've only read that once in one study). I am also Grade 3 (8/9 - tubular was 2/3) and her2- also. My score was 39. I suspect you would be high (31 and up) as most (though not all) grade 3s are, but possibly lower than my 39, but there are other genes that are measured that are not reported on in the Oncoscore report.
I've come to the opinion that it comes down to is chemo recommended or not. There seems to be a certain randomness for all scores on who has recurrence and who not....people with all ranges of scores survive for many years NED and not! Our scores may be correlated to how soon, IF recurrence should happen. That's just my fuzzy opinion, so take it for that.
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KathyL624 - All of the receptors are active, but if the ER score on your oncotype report is low, it means that at the time the tissue was taken, the ER gene was not highly expressed. Also good to note that Oncotype lab typically gets a block of tissue that was not subjected to IHC, so if the tissue sample is patchy, they may be testing a pocket of cells that contain more or less ER positive cells. In the end, I don't think the actual ER score on the Oncotype report is all that important - if it's in the positive range and your pathology says that 99% of the cells are ER positive, it's a good thing. Being more or less positive on the Oncotype scale is really splitting hairs.
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grandma3x - in a very unscientific way, that is the answer I get from my MO. You are ER+. Like it is a binary thing. You are or you are not. Some of us just require a more thorough explanation and again, I thank you for that.
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Though, oh gosh, you see it is never ending. If one is 95%, what are those other 5% cells doing?
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Quinncat - that's a question I have been asking since the beginning - what are the othe 5% doing? I hope someone with more knowledge comes along to answer that one
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