Another Oncotype question

Anonymous

Thanks Vicki! I'll do that!

jenn333

Chachamom, since you're HER2+ are you not having Herceptin? I thought that was a given for HER2+ BC?

Anonymous

Jenn333: I thought so too!.....but apparently it's controversial for tumors 5mm - 1cm.

And even more so for those like mine <5mm.
<br />I would feel better if my oncotype was really low! But my MO says 20 is low enough to advise no chemo/Herceptin.

lisa2012

So I got my stats from onc today at 3rd chemo of 4. ER 30%, PR 0%, K167 43%, oncotype 38. I had seen them at the beginning but didn't have a copy. given what you all seem have heard, does that exPlain why chemo was so strongly recommended? Remember the oncotype had my ER "negative" at 5%.

Thanks for any thoughts!

Cindyl

Yep Lisa. That would explain it.  Even 30% isn't very high for the ER numbers. Both my ER and PR are in the high 90's.  What that means for you, as I understand it, is that you are less likely to see as much benifit from the anti hormonals, make hitting harder with chemo a better option for you.  I know nothing about the K167, and of course the 38 oncotype is over on the "have the chemo" side of the chart...

QuinnCat

Even 30% isn't very high for the ER numbers. Both my ER and PR are in the high 90's.  What that means for you, as I understand it, is that you are less likely to see as much benifit from the anti hormonals

Cindy - is this true? When I've asked my MO about my mediocre ER status, though still positive, they all say "it doesn't matter."  I always got the sense it was like being pregnant or not.   Then again Oncoscoring does give is more points the higher the score is (actually less, as it substracts from the final total oncotype score), maybe they're not giving me the correct picture?

btw, my Oncoscore for ER was 9.0...mediocre, but my initial path said 90%.  I've always interpreted this as 90% of the sampled cells have estrogen receptors, but their reactivity was a 9.0...which is sort of middling on Myriad's scale.  Am I wrong about this? 

jenn333

Kam: I think an Oncotype reading for ER of 9.0 is 90% isn't it?  Could be wrong - I don't have my report in front of me - but I know they don't express it as a %, rather it's a decimal number.

Cindyl

Yeah I think the oncotype reading for ER 9.0 = 90% mine is a solid 10.0

 It's not that you'll get no benefit from the anti-hormonals (going from my best recollection of what the MO said) but he said the higher the number the more benefit I'd see.  So I would assume the opposite is true, the lower the number,  the less need for anti-hormonals, but that is just based on what I thought he was saying.   Probably best to follow up with someone who actually understands this stuff.

 Of course to complicate things, it's also my understanding that with a large tumor, a sample from one area might have a very different pathology than a sample from a different area.  It's all very confusing.

QuinnCat

I don't think Myriad's 9.0 equates to my 90% as I know (from memory), the Myriad score can go to atleast 12.5 (maybe more, but I've seen numbers like 12.5), above 10, on their scale bar.    The implication is that 12.5 would equal 125% and I think in this situation, over 100% wouldn't make sense.  The 90%, for me, came from my initial biopsy.  Myriad reports a score...it could be that 9.0 does equate to some percentage and Myriad just lowered that would be 90% in my case.

Any info welcomed.

lisa2012

Well, my tumor was small' barely 8mm. So there might not have been variation- though they couldn't get it from the biopsy,they had to send again for a bit of the surgically removed tumor. Needed more RDA or something.. Made it take an extra 2weeks for results!! And 0% PR ..So maybe I am weakly ER positive. Glad I am doing chemo though it stinks.

Think my Onc said even if you are low positive ER he believes that i derive benefit from anti hormonal. I guess when I get to that point, we'll see, and if I don't like the side effects, I'll discuss the options. My cousin ( same age, had BC last year) is triple negative. At least I have a bit if hormones!! Sometimes this seems like such a game of odds, you can have it "understood" and can get knocked sideways. Sure good to have this little group that is equally interested in this question.

purple32

How do you get these scores ?  Are they routinely done at LX or biopsy ?  Is a High ER better than a low or ?>???
I want my scores !

jenn333

You have to ask your surgeon or MO to order the test for you.  As a rough rule of thumb, it seems that high ER/PR, together with low grade and low Ki67 generally correlates with a low score unless you're HER2+. 

mary71145329

Purple32--The ER/PR percentage should be on your biopsy pathology report. The higher positive ER the better the cancer can be controlled with hormone receptor block therapy.

I did see on the oncotype report that the ER and PR are reported as decimals. I don't believe that number directly converts to a percentage. For example, my ER came back at 7.9. The first available positive score is 6.5 and goes up 6 to 12.5. I think that would convert to 23% positive.

Correct me if I am wrong.

QuinnCat

Mary - where are you getting this conversion to 23%??  I've had this question from the beginning...how does the Percentage listed in my intial biopsy relate to the score in my Oncotype test?   As I've said, I'm "90% ER" on the initial pathology, but 9.0 ER on the Oncotype.  I see no percentages listed on the Oncotype.  After 6 months of not really knowing the true answer I've interpreted (or gleaned without remembering the source) the 90% as the amount of sample that has ER receptors and the 9.0 Score as how receptive the cells are (and I don't know how that would be measured, so that's just an idea thrown at the wall).

mary71145329

Kam170--This is my "idea thrown at the wall" as well...lol I'm figuring that if the scale of positive is 6.5 to 12.5 on the oncotype that each "section" so to speak is equal to 16%. Meaning, if your ER positive is 7.5 that would equal 16%, 8.5 would be 32%, 9.5 would be 48% and so on.......I could be completely wrong.

QuinnCat

Well we certainly have 2 contradictory ideas.  One of us could be right or we both could be wrong.

mary71145329

Wishing for someone who knows for sure...........

coraleliz

This was discussed awhile back on another thread. Here's what I remember. The pathology report is subjective & is given in a percentage by a pathologist. The oncotype is quantitative & has a number assigned to it. There were some women who's MO ordered oncotype done on tumors with no or low ER per pathology. If it came back positve they would benefit from Tamoxifen. My tumor was 99% on pathology & 9._ on oncoscore. I thought I should be up around 12. Wish I could remember the older thread or the poster who explained this much better than I can.

purple32

My Onc called me last night.  ( to discuss arimidex/ no thanks)  I am post menopuasal , but wont take it due to bone loss .

I asked her about the %. She said they never do them at MassGeneral!!!!

She said  what they do is called staining. She said they stain and if it is above 10% it comes out as positive. They do not quanitify it and they have no numbers of percentages for me.

I dont like it because how am I to know how much the tamoxifen is eally going to help me .

I had asked my BS my ki67 and she said they do not do that test either !

jenn333

From what I've read, any ER% is ER+ and is responsive to Tamoxifen.  The Oncotype score will give you your ER/PR percentages and, I think, your Ki67.  I would ask my MO to order the Oncotype test.  It will tell you if chemo will be of any benefit to you.

purple32

I have already been  told I am very early stage/ clean and clear and so chemo is not  a consideration.

THX

Lee7

Otter gave a great explanation earlier in this thread of Oncotype scores...on page 2, look for her posts April 25th.

PLJ

IHC staining and Oncotype dx measure different things. IHC measures estrogen protein receptors on the cell surface while Oncotype grinds up a sample and measures the messenger RNA (mRNA) inside the cell.

 I was highly ER+ on both tests, but, PR- on IHC while highly PR+ on Oncotype.

mary71145329

Otter's explanation is where the oncotype score is derived from....she also linked to the formula. What we're trying to ascertain now is from page 3 of the oncotype listing the ER, PR and her2neu as decimal scores and how those correlate to the original percentages we were given from our biopsies. But I bet Otter has that answer too Ottttteeeeerrrr!

QuinnCat

 "Other genes in that group (the "ER Group") are PR, Bcl2, and SCUBE2."  (from Otter's post on page 2)

Geonomics just leaves too many questions, imho, unanswered!   Especially considering the $$$ for the test.  For instance, I went from 90% ER (staining) on initial path to a mediocre 9.0 indexed score, with no informaiton on how the indexed score is compiled.  e.g. Do they combine Bcl1 with ER and SCUBE2 with PR?  Did my Bcl2 and SCUBE2 values negate my high ER score?  Or was the initial path wrong? Or maybe the Oncotype ER value is wrong?  Is this a straightline index or a logrithmic index (e.g. the difference between a 10.0 score and a 9.0 score represents a much higher equivalent staining percent than the difference between 8.0 an 9.0).  What the heck are Bcl2 and SCUBE2 anyway and what do they do?

I called Geonomics to ask more detailed questions, especially about some of their "averages" for the high category and the young woman on the other end of the line said she couldn't give me more info because "they weren't licensed to do so."  I'll give her that she meant to say "it is proprietary information;" she was very young.  I get it, the MO will just look at the final RS and Rx Chemo or not, but it seems that knowing a bit more about one's cell biology, which box they failed or exceeded in, might elucidate something.  Personally, I am left with not knowing if my initial path or the Oncotype score for ER were out of wack, or that my 39 score resulted from a high proliferation rate (which I only know as a possibility from such a high Ki67 by my initial path - 60%).  Too little info given for the amount of money paid.

In a sense, I am lucky in that most of my first path values indicated the possibility of a High Oncotype score, but I feel very bad for those who appear to be high grade, high Ki67 on initial path, but end up with a low Oncotype score.  I've seen a couple here in BCO.  I'd want to know why the two reports were out of synch before I forwent chemo.

QuinnCat

PLJ "I was highly ER+ on both tests, but, PR- on IHC while highly PR+ on Oncotype." 

This makes it even more mysterious as I was highly ER+ on first path, mediocre on Onco.  PR 5% on first path, low on Onco.  Our individual correlations from path to Onco aren't even in synch and the measurements from path to Onco are positive in one case, inverse in another.  (Hope you get what I mean).  These measurements (path vs Onco) seem to be measuring totally different things if this is the case.

purple32

Geonomics just leaves too many questions, imho, unanswered!

I might agree.  I have not had their tests, but I did call there today.  They told me I would not get a ki67 and not ' an actual percentage".  That was a bit discouraging.

I was told the tests was $4150...but could be covered by ins and possibly fin. aid.

PLJ

I spoke with one of their techs last year (had several conversations actually) and asked about the relation of IHC % to Oncotype dx scores. I was told that the Oncotype scores have not been validated to correspond with IHC staining because they measure different things. You can read about the formula to understand what is measured but their results have only been studied to correlate with RS. Because they measure very different aspects of a tumour, along with the fact that tumours are heterogeneous, you can't seek to make a connection. Just like different slices will perhaps stain differently, thereby yielding various % staining, the intracellular mRNA evaluated in Oncotype dx may yield a different result to pathology report. Again, because the means of recording a score is unique to Oncotype Dx, there is no scale to translate this number to correspond with pathology. Apples and oranges.

Kam170: It is my understanding that if both IHC and Oncotype come back with positive scores for a particular receptor, then the receptor should be functioning. However, if one is positive and the other negative, then it is questionable whether the receptor would actually function as it should.

Cindyl

PLJ... fascinating. I guess it's natural for us to try to make everything line up and to be confused when things don't jive.  Good to know it's kind of apples and oranges.

PLJ

Yes, totally natural Cindyl. When I got my RS last year, I wanted to know *everything* about the report! I particularly wanted to know why my PR was highly + on Oncotype Dx but - on pathology. Several conversations and pages of questions answered later, I was satisfied!

When ER is highly +, along with a low mitotic rate (or ki67), you get your biggest bang out of hormonal therapy and chemo is typically a less efficient means of cell death. Of course other things like nodal status, grade, size, histology, Her2 and LVI are also taken into consideration when contemplating the big chemo question. It is my understanding that the ER, PR and ki67 scores are given considerable weight in the Oncotype Dx formula. Had my Oncotype Dx PR come back -, I'll bet my RS score would have pushed me into the intermediate range and chemo would have been recommended. It would be nice if Genomic gave a complete print out for all of the genes evaluated. It is frustrating to have some of your personal health information kept in secrecy.