Low Onco Score but Node Positive - Chemo?

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DZF60
DZF60 Member Posts: 4

Hello - Just got my Onco score today. It's a "2". Is that even possible? Meeting with MO tomorrow to discuss. I'm not trying to avoid Chemo. This is my second breast can cer, first one in 2004, 12 years ago. Had chemo then and it was doable. For this new cancer - IDC, 1CM, ER/PR + (94% each), Her 2 -. 1/1 positive nodes. I was pissed that my surgeon didn't take more nodes. The one that was positive had 5mm of cancer on it - so not microscopic. So I am VERY nervous about the node situation and wanted the surgeon to take more. He said he didn't think it was necessary. Now I'm counting on chemo, rads and AI's to take care of anything left behind. I don't want to give up the chemo, but what does a 2 mean exactly? Thanks for all your help.

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  • DZF60
    DZF60 Member Posts: 4
    edited November 2016

    More information, I'm even more confused. 5 year risk of recurrence with just Tamoxifen is 7%. 5 year risk of recurrence with Tamoxifen and chemo is 10%. This doesn't make sense. But my onc said it could be. I contacted Lillie Shockley at JHU and she said those scores sounded stange (reversed) and I should contact Genome, which I did. They are standing by the #'s. Please, please can somebody weigh in on this? Is this possible? I need to move forward with treatment soon! Thanks!

  • Connie1230
    Connie1230 Member Posts: 192
    edited November 2016

    I have no idea but sure do understand your confusion. It doesn't seem to make sense at all. Many prayers that you will find the answers you need to move forward

  • Optimist52
    Optimist52 Member Posts: 302
    edited November 2016

    Hi DZF, with an Oncotype DX score so low, I believe you can certainly skip chemo this time. I also recurred after 12 years, however had 4cm ILC tumour, and isolated tumour cells in two nodes (technically classed as node negative). My score was 22. My MO told me unequivocably that it wasn't worth the risk of chemo with that low intermediate score; this was backed up by another MO I saw some time later. So a score of 2 seems pretty damn good. Oncotype DX Breast Recurrence Score predicts chemotherapy benefit and the likelihood of distant breast cancer recurrence. In other words you have a very low risk of recurrence and a very low benefit of doing chemo. You would however no doubt gain some benefit from anti-hormone therapy.

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

    Hi DZF60:

    Do you have a copy of your node-positive (N1-3) Oncotype report? You should insist on receiving a copy for your review and records.

    Regarding whether to add chemotherapy in any particular case, I think this is a question that requires the expertise of a medical oncologist familiar with the details of the specific case. A second opinion may also be very helpful.

    A medical oncologist should be able to explain the meaning of your Recurrence Score ("RS") to you, and provide a recommendation in light of all relevant clinicopathologic features and the RS result. They should also be able to provide a clear explanation of the study results (and any associated caveats) featured in your report, and how they are viewed in clinical practice today (in light of any additional available evidence re the test that is applicable to your situation).

    In node-NEGATIVE (N0) patients, the clinical data shown in the Oncotype report that compares outcomes in those receiving endocrine therapy alone (Tam) versus endocrine therapy plus chemotherapy (Tam + Chemo) are as you would expect: the Tam + Chemo curve is lower across all scores, and the curves converge as Recurrence Score approaches zero.

    The data in the node-positive (1-3N+) report is from a different clinical validation study (the SWOG 8814 study) that was performed in node-positive patients (using different clinical endpoints, as explained in the notes above the graph), and the curves actually cross each other just above the cut-point between Low and Intermediate risk groups.

    Node-Positive (1-3 N+) Sample Report for Recurrence Score of 6:

    image

    Keep in mind that the 5-year risk shown in the node-positive report is an average (with Confidence Intervals ("CI")) and is based on the results of a validation study that compared outcomes from a group of patients who received Tam with a group of patients who received Tam + Chemo.

    In this Sample Node-Positive (1-3 N+) Report, with a Recurrence Score of 6, for Tam Alone, the average "5-Yr Risk of Recurrence or Mortality after 5 Year of Tam" measured was 8% (95% CI: 4% - 15%) and with Tam + Chemo the average risk was 11% (95% CI: 7% - 17%), oddly higher, but note that the Confidence Intervals ("CI") overlap. Check your printed report for the averages and confidence intervals associated with your Recurrence Score.

    In light of the large and overlapping confidence intervals, what does this mean about the average recurrence risks and what is the clinical significance, if any, to those with "Low risk" scores who receive a recommendation for chemotherapy? What have other subsequent studies shown about Recurrence Risk in patients like me?

    You need a trained medical oncologist to advise you regarding such questions to be sure you receive accurate information from a person with appropriate training, familiarity with the test, and all relevant studies available that may affect understanding of its import.

    To the extent that it may help you frame your follow-up questions, I provided my layperson thoughts about the cross-over and some information from the study publication in another thread:

    https://community.breastcancer.org/forum/105/topics/812929?page=35#post_4784284

    Please note that I am a layperson with no medical training. I never received an Oncotype test, and I never received related medical advice. There may be errors in fact or understanding in this and the linked post.

    All information should be confirmed with an expert professional medical oncologist to ensure receipt of accurate, current, case-specific expert professional advice.

    BarredOwl

  • coraleliz
    coraleliz Member Posts: 1,523
    edited November 2016

    DZF- I had a reoccurance score of 4 with 2 positive nodes. The graph BarredOwl post shows no benefit for me. How did you do on endocrine therapy? Sometimes I found myself wishing I would have benefited from chemo(usually a fleeting thought), they say all you have to do is show up. But endocrine therapy caused way too many SEs for me. I really felt like I had to suck it up & stay with it. I wonder how long they'll want you to stay on an AI or tamoxifen? Is a 2nd opinion possible? just what you need, more doctors appts

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

    Hi DZF60:

    I would add that the reliability of this type of test depends on the scope of "clinical validation" and the type of patients included in the studies that show prognostic ability, as well as the quality of the studies and strength of the data. In turn, the scope of validation is generally reflected in "eligibility" requirements for the test and in what clinical consensus guidelines say about in whom it should be used.

    The commercial provider of the test lists the eligibility requirements here, as up to 3 positive nodes:

    Formal Eligibility: http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/OncotypeDXBreastCancerAssay/PatientEligibility

    In some patients with lymph node involvement, radiation is used instead of further axillary dissection. That approach appears to have benefit in terms of reduced morbidity, such as reducing the risk of lymphedema. However, when this approach is used, the actual number of positive nodes is not known. Accordingly, "eligibility" for the test is not clear.

    Moreover, if the actual number of positive nodes was 4 or more, then the associated recurrence risk with Tam alone (or with added chemotherapy) would be higher than shown in your Node-positive (1-3 N+ report). They have looked at that. See for example, Figure 6A-6B of Albain (2010):

    https://www.researchgate.net/publication/40683006_Prognostic_and_predictive_value_of_the_21-gene_recurrence_score_assay_in_postmenopausal_women_with_node-positive_oestrogen-receptor-positive_breast_cancer_on_chemotherapy_A_retrospective_analysis_of_a

    With 4 or more positive nodes, the NCCN guidelines (Version 2.2016) do not include use of the test, and instead recommend added chemotherapy.

    As usual, please confirm all information above with your treatment team.

    BarredOwl

  • labelle
    labelle Member Posts: 721
    edited November 2016

    I had a low oncotype score (11) and a positive node. NO chemo per my MO at Vanderbilt and the BS and tumor board at UT. My chart showed a higher risk for recurrence or mortality from any cause with chemo than without it. As this was explained to me, that is not because taking chemo would increase my risk of a recurrence, but because chemo has its own inherent and serious health risks it would increase my risk of mortality from other causes. Heart damage and a lower immune response are a couple of the serious problems that can be caused by chemo.

    I lost both of my parents to pneumonia while they were undergoing chemo treatment. Yes, they were older and both would have certainly died of their cancers in the end, but chemo does open one up to a variety of opportunistic and sometimes fatal diseases and problems, hence increasing one's mortality from any cause. While the odds of chemo helping someone with a low oncotype score are low, having a low oncotype score does not decrease the odds of mortality due to chemo. When someone has a higher oncotype score, the odds of chemo being helpful outweigh the odds of of it causing harm and so the graph shows chemo to be likely beneficial (as opposed to not having it) for those with higher oncotype scores, despite its dangers.

    From what I can tell it is about playing the odds. My score said the odds of chemo helping prevent a recurrence were less than the odds of chemo causing me serious harm, hence the OC's recommendation of no chemo with a score of 11 and a positive node. With a score of 2, I wouldn't even consider it!

  • DZF60
    DZF60 Member Posts: 4
    edited November 2016

    Thank you everybody for your input. My MO is against the chemo but said if I insisted, it would be 4 rounds of CT (I think? My brain is fried right now) - chemo would be every 3rd week.. He's really against it though. I just can't wrap my head around having a positive node with no chemo. And, who knows exactly how many nodes were positive as surgeon only took one. If indeed there were more than 3 positive, well, that invalidates the whole onco score doesn't it? I'm getting a second opinion next week at Fox Chase Cancer Center with Dr. Lori Goldstein. And yes, I was on Tamoxifen first time around, 2005-2009 and then Letrazole (so my onc says, but I don't remember that, BIZARRE! - 2010-2013.) That's a weird 4 year time frame - I've been trying to corroborate this with my nearby pharmacies, but am having trouble getting records from back then.

    I appreciate everyone's input. I wish it was absolutely cut and dried for me - node positive, chemo will help. I would sleep better at night.

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

    DZF60:

    Having more than three positive nodes means that one is not formally "eligible" for the test, and guidelines would recommend chemotherapy. You can still run the test and get an accurate Recurrence Score with 4+ nodes, but the risk of recurrence associated with any particular score would be higher than shown in the graph on the 1-3+ report. The different level of risk between the group with 1-3+ nodes versus the group with 4+ Nodes is shown in Figures 6A-B of Albain (2010) linked above.

    Glad to hear you can ask all your questions in a second opinion. I hope it is very productive.

    BarredOwl

  • coraleliz
    coraleliz Member Posts: 1,523
    edited November 2016

    DZF- Did you have a PET scan? When my case went to the tumor board, that was what they recommended. Another imperfect test, I know........ No new nodes or anything else showed up for me.

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