NEW Oncotype Dx Roll Call Thread
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my Oncotype score was 23, but I had a positive node. Based on the positive node, docs recommended chemo. I wouldn't have had chemo if it weren't for that positive node. I was 48 at the time of my diagnosis.
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Mine also 23. Currently doing TC. No nodes but PR just 25%.
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The Oncotype brochure is excellent. The Oncotype results are presented like this when you get them. I do not believe that most women realize that chemo is giving them only a 1 or 2 out of 100 advantage.
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Mine worked out to be 5-6% depending on where you looked on the confidence interval.
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I found that this table from the Sparano paper setting up the TAILORx study was really helpful. I'm not an MD. I'm a PhD scientist and I know my way around a table and a graph. A p-value of 0.54 means no significant effect of chemo for the 11-25 RS. In this retrospective dataset. That's why the results of TAILORx will be so important. There is a very strong beneficial effect with higher recurrence scores, that is clear. I read all the primary literature I could absorb, listened to all the arguments and made the best decision I could make for me. For those of us in the grey zone (I'm 20), it's the best we can do.
From Sparano, Joseph A. "TAILORx: trial assigning individualized options for treatment (Rx)." Clinical breast cancer 7, no. 4 (2006): 347-350.
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JCtreehugger, thanks so much for this information. I believe that many of us are challenged when it comes to graphs and risk.
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Yes thank you. I think this is true in general but when I got my own individual info and graph from genomic health, my info indicated 5-6% benefit. Looking forward to these study results too.
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Pat--sorry for the delay in responding but my e-mail notifications got turned off (happens from time to time for all of my threads--sigh). My oncologist recommended the Oncotype testing for me because I told him I didn't want to undergo chemo. He told me that he would feel better about my decision if I had a low Oncotype score which, it turns out, I did. I was highly ER+/PR+ too, took Tamoxifen before I had a total hysterectomy, (switched to Femara after hysterectomy), and did Herceptin for one year. I am doing well and it has been almost three years since my diagnosis (BMX was 2/2013).
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Lori, that is great! Congrats for investigating further and looking at all your options!
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I hope that everyone who does have a recurrence or mets will come back and post their Oncotype score. I had Oncotype 11 and am 8 years out. No recurrence or mets yet.
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18 months out with Oncotype of 19 - just had recurrence in axillary nodes.
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Jilly--I am so sorry.
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I am so glad that this thread is still live. This helps all of us make good decisions.
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JIlly, so sorry. I am also glad this thread is still out there.
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famerjo
With this: Oncotype 19 Ki67 29.1% ER 90% PR 5%, I'm very curious how the Oncotype score reported out your ER and PR - I assume the 90% and 5% are from your biopsy? Btw, exactly the same %'s I got for ER and PR from initial biopsy, though my Ki67 was 60% causing my score to go to 39. My oncoscore also reported back a mediocre ER, compared to the 90% I got on the initial biopsy. To be honest, with what they consider a high Ki67 (> 12%), I'm surprised your oncoscore is middling, but maybe your high ER saved you. Also, high ER and low PR is a more aggressive than having high ER and high PR (luminal
.Sorry about your recurrence in your nodes. Do they think it was missed or a recurrence?
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I have no idea why mine was a high oncodx of 34. I didn't do recommended chemo, almost 5 years and doing fine.
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Meow
Not sure you are referring to a question I had, as it sounds like my kind of question or comment, but we have a similar Dx and you are only a month ahead of me on that. Congratulations on skipping chemo! Was that against doctor's orders? Can I ask the size of your tumor (mine was 1.4 cm)? I have permanent neuropathy from chemo and it makes things I love to do unpleasant. If I could have seen a crystal ball that resulted in chemo not working or making a difference, then I would have been happy to skip chemo. Something I'll never know.
ER+ PR- tends to result in a high Oncotype Score, that along with low ER (and/or low PR) and high Ki67.
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Quinn Cat, I skipped chemo against my oncologist recommendation. Also I think I will never go back on AI medicine. I am off everything and I feel really good. My pain is almost gone and the puffy face is much better.
All I need to do is lose weight and exercise more and I think I am good to go.
I don't really understand ER + and PR -, and why it is linked to aggressive tumors. My Nottingham scores were 5 and 6 both with mitotic rate of 1. Maybe I should have had chemo but so far so good. I don't like fooling around with medications. I would be interested in future targeted therapies if I should re-occur.
One tumor 1.1 cm the other 1.3 cm. I had one IDC and one ILC, Nottingham scores 6 and 5 respectively.
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My Nottingham was 8/9 - I know my mitotic was 3, so that's where I beat you out. (My oncoscore was 39.) I assume mitotic correlates to Ki67...mine was high at 60%. ER+PR- is considered luminal B. ER+PR+ are luminal A. Lum B worse than Lum A, but better than triple negative!! My MO seems to think Her2+ is good because there is herceptin - a conundrum. After 5 years, our risk is the same as a luminal A, or so I've read. The problem with that, while it sounds great, it seems lower risk cancer happen later!
My cousin had ILC hormone positive. She skipped hormone blockers, except the lumpectomy and radiation, against doctor's orders. She must be about 8 years out now. (I don't think chemo was recommended for her and she never had an Oncoscore - she lives in Canada - not saying that is why, but might be part of it.)
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Hi QuinnCat -
Whelp. My Oncotype at dx was based on a negative node so the result wasn't accurate - AND I was told no chemo based on that result. Anyway, had ALND 5 days ago...they took 11 nodes, just the one was positive but a big node it was at 2 cm.
My BS continues to say I had a false-negative SNB, that this positive node is from initial dx...tumor characteristics identical to before. He said it's rare, less than 1 %, and then went on to say due to the low PR it may be Luminal B....why oh why wasn't this discussed the first time.
So Femara wasn't working? Or is it the low PR where AI would not help much?
Meet with MO next week.
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i need to qualify something.....can be er+pr+, but high ki67 (gt 12%) and be luminal B, but for some reason I think the low pr, but still present, comes with more aggressive breast cancers. Does that make sense (one finger typing on an Ipad, so can't say all).
I can't really answer your question farnerjo about AIs not helping much with low PR values....Ive seen so much contrary info on subtypes and this, but i just posted a link to a video on (wiil you be doing 10 years of AI thread) and some MOs were wondering outloud whether some breast cancers in the luminal A category needed any hormone blocker treatment at all (and no chemo, definitely)...they used, i think, a cutoff of 11 on Oncotype, but to the contrary the rest of us should definitely be doing AIs!!
I would also say, if hormone blockers always worked on hormone positive cancers, then there would never be recurrence or mets, and that is not happening
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I’m definitely Luminal A, with an ODX of 16, ER+ 75%, PR+ 97%. Adding chemo to an AI would give me only a 1-2% better mets-free chance than the AI alone. I wonder whether the degree of PR + determines not just how well the tumor cells respond to Tamox. but also to AI therapy....or perhaps have some effect on when, if ever, AI resistance manifests itself. I think a missing piece of the puzzle may be expression of the particular enzyme that allows estrogen-starved ER+ cells to synthesize an “acceptable estradiol substitute” out of serum cholesterol (and which kind of cholesterol--VLDL, LDL, HDL or any or all). Since progesterone sort of “buffers” estrogen “in the wild” in the general non-bc setting, I wonder what effect the number of progesterone receptors has on a cell’s estrogen receptors. Can it be that in tumor cells, progesterone also “buffers” estrogen’s effectiveness in mitosis, and the fewer the progesterone receptors, the less progesterone gets to the cell and the less estrogen a cell needs to survive and proliferate??
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I was wondering if we could wake this thread up again... so scared
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I was just reading through the beginning of this thread and wonder if anyone can explain to me how people with the same oncotype number have different recurrence percentages? My oncotype was 9 and the percentage on my report says 7%. When I look at the top of the thread several reported an oncotype of 9 with different recurrence percentages.
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How differently are people reporting? Some may be citing the top of the Confidence Interval (CI) rather than the middle of the upper and lower band. I think it would be more typical to report the middle of the CI band per how the recurrance rate is presented. Some might be subtracting 2% from their recurrence rate for taking Aromatase Inhibitors rather than Tamoxifen. Some might be reporting their recurrence rates with the chemo benefit factored in, but I think that would be improper.
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Kathy, I noticed the same thing when I first looked for others with my score. I guess there are slight differences that lead to these. My score was also 9, and my risk percentage was 6% - directly from the first page of my report:
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That is odd. I would not expect the "10-year Risk of Distant Recurrence with Tam Alone" that is printed to the left of the first graph of the node-negative reports to be different for the exact same Recurrence Score.
This is because to my layperson knowledge, the same data set has been used since inception of the test (i.e., the results of the node-negative NSABP B-14 study by Paik (2004)) to provide 10-year distant recurrence risk estimates with Tam Alone.
The report title at the top of page 1 should indicate that it is a "Node Negative" report if you are node-negative:
In the node-negative report, the title of the first graph refers to the NSABP B-14 source study. In this sample, the Recurrence Score was 10 and the 10-year risk of distant recurrence with Tam Alone is 7% (CI: 4% - 9%).
BarredOwl
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Looking for advice to decide whether on not to do chemo based on my oncotype score of 22. My oncologist is leaving it in my hands to decide. Would lower my distant recurrence rate from 14% to 8%, not sure if it is worth putting my body through chemo. Anyone in this oncotype range and how you decided to do chemo or not???
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Hi Bessy, my Oncotype score was also 22. My MO was quite sure that chemo was not worth the risks. She didn't say anything about the recurrence rate being lowered to 8%, I understood it was just a 2 or 3% reduction. However I don't know the details of your diagnosis i.e. grade or node involvement, would you be able to add them to your profile?
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my oncotype was a 13. my age has me absolutely terrified. I was stage 2a no nodes. I literally can't breath from the constant anxiety and fear of Mets. How are we basing our life on a test?
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