ER/PR score on Oncotype report

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ER/PR score on Oncotype report

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  • MarciaW
    MarciaW Member Posts: 6
    edited May 2008

    Since Feb 08 Genomic Health has been reporting ER and PR scores in addition to overall Recurrence Score, but I can't find anything that shows the distribution of scores.  I know that the cutoff for ER positive is 6.5, that the number can go as high as 12.5 according to their chart, and that I have a 9.5, but I don't know how that rates in terms of degree of responsiveness.  Does anyone know how the scores fall out?  Is 9.5 middle of the pack, better or worse?  (I know it looks like it's right in the middle, but don't know if anybody actually scores a 12.5..)

  • otter
    otter Member Posts: 6,099
    edited May 2008

    MarciaW, I don't think they really know.  I suspect that's one reason why Genomic Health has started doing the quantitative PCR to measure ER and PR expression.  They probably want to know if there is a correlation between the amount of expression and some clinical variable. I remember reading something about why they started reporting the quantitative ER and PR, but I don't remember what the article said.  Can I blame chemo brain, or is it just laziness?

    Until now, I think any positive ER value (using IHC) was considered to be responsive to estrogen blockade (tamoxifen) or deprivation (AI).  Maybe things will be different in another few years, once this is all sorted out.

    Don't you hate being a guinea pig?  Hopefully, leaf or Tender or Beesie or AnnNYC etc. will stop by and add some intelligent advice to all this.

    otter 

  • MarciaW
    MarciaW Member Posts: 6
    edited May 2008

    Well, the numbers are definitely going into the Recurrence Score, so they matter a lot to the end result.  The equation has a number of factors that increase it (like whether it's Her-2 positive, and its proliferation rate) and a couple that decrease it (mainly the extent to which it's ER and PR positive).  The bigger those numbers are, the more they reduce the score.    I have Grade 3 IDC but my oncotype score came out to 17 -- high end of low.  So either their view of the aggressiveness is lower than the path report, or those ER/PR scores made a huge difference.  Just trying to figure out which...

    Otter, I see you're getting chemo with a similar diagnosis to mine, but your grade is lower.  Only worse factor for you is PR-.  My oncologist wants to skip chemo based on the 17.  Did you choose the chemo, or did your onc recommend it?  I'm trying to sort out the chemo or no chemo question right now -- second opinion next week.

    Thanks

    Marcia 

  • tiff2008
    tiff2008 Member Posts: 278
    edited May 2008

    Marcia-I also had a 17 oncotype score with a Grade 2 with both ER & PR +, my oncologist recommended chemo for me.  What do you mean by "the cutoff" score of 6.5 vs 12.5?? I'm not sure I'm familiar with those numbers or where they come from?

  • otter
    otter Member Posts: 6,099
    edited May 2008

    tiff, I think Marcia is talking about the ER and PR results in the Oncotype report, not the Oncotype recurrence score itself.

    Marcia, yes, the formula for calculating the Oncotype score is really complex.  You are right in noting that it includes ER and PR levels, and also 14 other genes that are involved in regulation of cell growth (positively or negatively).  Each value is weighted (by a multiplier factor) according to its importance in the grand scheme.  The original papers in which the Oncotype formula was devised are kind of neat reading.  I really wish Genomic Health would report all the the expression levels that go into our Oncotype scores, and not just the ER and PR levels.

    As to why I am getting chemo:  Originally, I was probably not going to need it.  My surgical oncologist was optimistic that I might not need chemo, because my tumor was less than 2 cm, ER+, HER2-, and had not spread to my nodes.  She handed me off to a medical oncologist, who said the same thing, especially since many ER+ HER2- tumors are not especially responsive to chemo anyway.  But he submitted tissues for Oncotype testing, as is (or should be, IMHO) the standard-of-care for early, node-negative, ER+ BC.

    My Oncotype score was 26.  Bah, humbug!  My onco said there were several factors weighing in favor of chemo:  The size of my tumor (greater than 1.0 cm); the fact that it was PR- (which may be "more aggressive," but the role of PR is still poorly understood); the fact that it was Grade 2 (Grade 1 would have been better); my age (56 is apparently not "old" enough to skip chemo); and of course the Oncotype score.

    The original "intermediate range" for Oncotype scores went from 18 to 30, which meant mine was in the upper half of that range.  What concerned me more was that 25 was the cutoff for the "chemo vs. no chemo" decision in the TAILORx clinical trial.  That's a study currently underway to test whether women whose Oncotype scores are between 11 and 25 really need chemo.  Anyone in that trial with a score above 25 automatically gets chemo; so if I had enrolled in the study (which I declined to do), I'd be getting chemo anyway.

    Oh, BTW, I switched onco's at about the same time my Oncotype score came back.  My original onco and I were just not getting along--a major difference in personality and style.  I was offered a different onco in the same medical group, and we get along fabulously.  She also recommended chemo, based on those same variables.  But it was really my choice--I could have declined, and I don't think anyone would have pressured me.  My calculated risk of recurrence based on my Oncotype score was 17% with surgery and tamoxifen/AI (no chemo).  According to the AdjuvantOnline calculator, I could reduce that risk by 1/3 (to about 12%) with chemo.  That's what onco #2 said, as well.

    So here I am.  It's not so bad.  (Ask me again in 10 days, when I'm in the throes of SE's from tx #3.)  OTOH, I would not do this for a "mere" 1% or 2% improvement in recurrence risk.

    otter

  • MarciaW
    MarciaW Member Posts: 6
    edited May 2008

    Yes, Tiff, Otter's right.  I was talking about the ER and PR scores that now come with an Oncotype report -- but unfortunately without a whole lot of info that could help put them in perspective.  And it feels almost criminal that Genomic Health HAS MORE INFO on my cancer -- the exact results of all those subtests -- and can't give it to anyone because they're "not validated" for the details.

    Otter, I can see now why you're having chemo -- I'm struggling at 17, as I said, mostly because of this dang grade 3.  Plus I'm 50 and not even a hint of perimenopause yet.  I feel like a prognostic oddball...  a couple of things that would definitely seem to suggest chemo, but with a recurrence score that says it won't help anyway and an oncologist who says I should skip it (he doesn't recommend chemo until it hits 20).  AdjuvantOnline says potential recurrence risk reduction is about 4%, but since the model hardly uses any actual data on my cancer I'm not sure it's even worth anything. 

    I'm feeling as pessimistic today as I have since this all started...  I'm leaning toward doing the chemo because I think being an oddball increases my chances of being in the 11% who will recur.  And at least maybe it would help to be pushed into menopause, though surely it would be easier to do that with OFS (which the onc doesn't think I need either).   But at the same time (irrationally maybe) I seem to believe it when they tell me the chemo isn't going to help anyway.   Hope the second opinion guy can help me sort this out. 

  • otter
    otter Member Posts: 6,099
    edited May 2008

    Marcia, that's what 2nd opinions are for ... at least, we hope so.  If #2 gave you the opposite recommendation as #1, then I guess it would be your choice.  Oh, heck.  It's really your choice anyway, and I have no idea what I would do if I were in your situation.  I hoped and hoped my Oncotype score would not put me on the fence; and it really didn't.

    I hope along with you that onco #2 can help.

    otter 

  • tiff2008
    tiff2008 Member Posts: 278
    edited May 2008

    Good luck Marcia with your decision, it's a tough one huh!!  So far the chemo's not been horrible, ask me after my 2nd tx next week :)  Stay positive, be strong, one day at a time....that's what I try to live by.

    Otter-thanks so much for all your support to everyone.  I always look forward to reading your messages!!

    Tiff

  • stellamaris
    stellamaris Member Posts: 384
    edited December 2015

    Hi and thank you for this post. Clarified a couple of questions I had concerning my Oncotype results...ER+/PR-/HER2-, overall score 27 with 18% chance of recurrence. My onc is not recommending chemo and has put me on Letrozole (AI). I was quire concerned about not having chemo, but decided to go with his recommendation based on the fact that the added benefit of chemo was only about 3%, which would not offset the impact of the side effects. I'm comfortable with my decision (I'm 65 and also have rheumatoid arthritis, so I am happy to avoid chemo side effects) My bigger concern is that there seems to be a fair amount of time that goes by between treatments, and I wonder if this has an effect on overall outcome. For example, diagnosed Oct 5, lumpectomy on Oct 30th...the results came back (unclear margins), re-excision to clear the margins on Dec 2...margins still not clear, so will have MX Jan 26 - is this common? There are still cancer cells remaining, and it seems that this overall 12 week delay could give it time to 'travel' - especially given that there was lympho-vascular presence. There was only microscopic cancer cells in 2/3 sentinel nodes, so my cancer has been deemed node negative, but I can't help being anxious about this time lag in treatment.

  • katcar0001
    katcar0001 Member Posts: 621
    edited December 2015

    The Oncotype ER/PR scoring has had me confused as well. MarciaW - We seem to have similar scoring. Mine was also 17 but Grade 2 with a low proliferation rate. My ER/PR was 8.7 and 7.8 respectively but the IHC was 100% for each. I think the grading system is more subjective, so maybe that also explains the disparity. Plus, one needs to factor in the heterogeneity of the tumor (I know the lab sent Genomic Health the "ugliest" part). I never wanted chemo, so I was grateful that the recurrence rate improvement would have only been about 2%, so that was reason enough to skip it and only take Tamoxifen. I was 51 at diagnosis.

    Stella - I wish I could offer to words of wisdom to ease your mind, but I don't know how the delay in getting your MX would affect your outcome. I can empathize with your concern. Is there no way to push for an earlier surgery date? It sounds like you are on an AI already, which is probably the most important part of your treatment at this point in time.

  • Leslienva
    Leslienva Member Posts: 489
    edited December 2015

    I thought chemo was always recommended for cancer with lymph node involvement.

  • Leslie13
    Leslie13 Member Posts: 202
    edited January 2016

    Not with Lobular Breast Cancer. There are quite a few studies showing that ILC has minimum benefit from standard chemo. Usually the cutoff is over 3 nodes in all cases. ILC cases may still need to consider radiation, but Chemo is so harmful to the body that it needs to be clear the benefit outweighs the risk

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    All the comments I am reading have helped me understand doctors recommendations. I had both ILC and IDC, I think I made the right decision for me, no chemo. I had only one oncodx score 34.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Hello! Thank you all for providing such helpful information! My MO called me last night to talk to me about my Oncotype score (22) and the risk for recurrence. He said that I could do chemotherapy or opt out. I said that I didn't want to do it. I forgot to ask him what he meant by "recurrence" ... if he meant the same breast that had the IDC or the other or both? Any input from you guys would be appreciated!!

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited January 2016

    JuniperCat, when the doctor is discussing recurrence as related to the Oncotype test, the recurrence is the 10 year risk of distant recurrence.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Dear SummerAngel,

    Thank you so much to responding to my inquiry. Does "distant" recurrence mean the other breast

  • stellamaris
    stellamaris Member Posts: 384
    edited January 2016

    Very informative post! My oncotype score was 27 and my tumour was 4.5 cm, also PR-, grade 2 (lobular). I am 65 (so I guess lobular and old helped me avoid chemo), They better be right or I'll sue lol

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    Juniper distant means in another area like bones, brain, liver .... That is what the concern is for breast cancer turning deadly.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Hello Meow13! I, too, am a cat lady! We have eight indoor cats and five barn cats. One more and I'm sure my husband will divorce me! Truth is is that he's as much a cat person as am I! Re: recurrence of cancer: is that the case even if the lymph nodes were negative in the original tumor? How can it spread if the tumor was excised?

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited January 2016

    JuniperCat, I'll jump in again and say that the original statistics regarding recurrence risk on an Oncotype report were specifically for node-negative cases, so the answer is yes. When the tumor is removed it still may - or may not - have left cancer cells in your body.

    This is what it says on my Oncotype results next to the recurrence risk score: "The findings are applicable to women who have stage I or II node negative, estrogen receptor positive breast cancer and will be treated with 5 years of tamoxifen. It is unknown whether the findings apply to other patients outside these criteria."

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi JuniperCat:

    I agree with SummerAngel. The tumor was in there for a while before it was removed, providing a potential opportunity for cells to escape either by the lymphatic system or via the blood stream prior to surgery. Unfortunately, this is possible even with node-negative cancers. Sentinel node biopsy (SNB) is pretty good, but unfortunately does not appear to be a perfect read on the question of whether any cells moved away (laying the groundwork for a distant recurrence). If SNB was perfect (which it is not), then the chemotherapy question would be more of a no-brainer for node-negative patients (which it is not). :(

    BarredOwl


  • MarciaW
    MarciaW Member Posts: 6
    edited January 2016

    As the patient who started this thread way back in '08 (they sent me emails when you all reactivated it), I thought I'd just chime in too. The risk that cells had escaped even though I was node negative (plus my lingering worry about the high grade of the tumor) ultimately convinced me to do chemo, even with my oncotype of 17. I don't know for sure that it made any difference, but it definitely helped me psychologically in feeling I fired every bullet I had. It's going on eight years now and thankfully all is still well. I had lumpectomy, radiation, four rounds of basic chemo, a year of tamoxifen, and five years of arimidex before "graduating" from the oncology practice about a year ago.

    Interestingly, I'm a cat lady too (five, down from six two years ago...)

    Good luck to everyone!

    Marcia

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    Hi Junipercat, I have 2 Persian cats one male pure white the other white/muted calico female. Oh the fur, daily brushing and vacuuming. They love to snuggle and make me feel better. Don't worry too much about your cancer chances are in your favor you won't have to deal with it again. The reason stage 1 is treated aggressively is so the probability is minimised that it will come back and might be metatised and become harder to control.

    I chose to take hormone therapy AI, no chemo even though my oncodx was 34. I am 4 years with no recuurrence.

  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Hello, all! I'm sorry it's taken me so long to respond. I wanted to thank you for sharing your experiences and helping me sort through all of this! Cat ladies rule! Um, cats rule my world😜!Yikes

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