Information on decisions with Oncotype score
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good to onow
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ZEKE, Thank you for this post. It is all so confusing. I was wondering why my reports were so different. I had a lot of bone pain when I started Tamoxifen making it difficult to get out of bed. I stopped it for a couple of weeks and on my own just took 10mg. That helped a lot. I think it helped my body get used to it. Now I take 10mg twice a day and so far doing well on it with a few supplements. Best wishes!
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@bessie, Thank you for sharing all of this information. I have IDC, Stage 1A, 8mm ER+/PR+ HER-. and zero lymph node involvement.
I just received my Oncotype report and it came back with a score of 29 which none of my Drs expected. Now, my oncologist is recommending 4 rounds of chemo. Something just feels off here. The report from the Onco company indicates a recurrence score of 18% at nine years. I have also read that you should do the Onco test before you start your hormone therapy. I started hormone therapy weeks before my surgery which means the specimen that was sent to Oncotype was after I had already started on Arimidex. Does anyone know if hormone therapy impacts the Onco scores? If so, in what way?
This is my third time trying to get my Oncotype Scores. The first two that were sent were indicated to be too small for the test, however, it took the Oncotype folks 2 weeks to tell us that. My third test that was done 5 weeks from my surgery date. I just don't understand the high Oncotype score of 29. Could it be the length of time from surgery to the time they deemed they had a good specimen? Could it be that I was on Arimidex 6 weeks or more before my surgery which means the tumor tissue that was sent to the Oncotype team was after I had already started my endocrine therapy?
Does anyone have any feedback? I want to do what is best to eliminate my recurrence as much as possible. Thank you for your help.
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Noone10, what's the grade of your cancer? And how old are you? Both of those factors are very significant when it comes to assessing an Oncotype score, because the recurrence risk associated with each score is based on averages, and if a patient's age or pathology is quite different than the average, that could increase or decrease their risk. Your tumor size is much smaller than average, so that would suggest that the 18% risk associated with your 29 score might be an overstatement, but that benefit could be lost if your tumor is grade 3 and/or you are young.
I don't know if having started on endocrine therapy prior to surgery would impact your tumor biology and therefore impact your Oncotype score. I imagine it would, but that's just a guess. And from what others here have said, it is possible that the time between surgery and sending in the sample for Oncotype testing could also have an impact, but again I don't know. While there is evidence that this may be an issue, I don't think it's been proven (yet).
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Hi flashlight
I tried all 3 anti hormone drugs over this past year and a half. I tried very hard to stay on them.
The joint pain was so severe I could barley walk. It crippled me. My oncologist said to try Tamoxifen. He said it does not give you joint pain. But I see you had bone pain which is the same thing. I am supposed to start tomorrow withTamoxifen he gave me 4 weeks to have a break. I still have the joint pain but it's easing off a bit. The last drug I was on was Femera.
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Noone, given your age, the size of your tumor and the grade, before you decide whether or not to do chemo, you should absolutely request that your MO run the Oncotype RSPC model, which I've described in my earlier posts in this thread (see my post to Topogio on the previous page). Your age is a bit older than average. Your tumor is significantly smaller than average. Your tumor grade is lower than average. With all 3 factors being more favorable than average, I can guarantee you that when you input your Oncotype 29 score along with these factors, the RSPC model will recalculate your recurrence risk to be substantially less than the 18% that was on your report. This model is provided to MOs by Genomic Health - they are the people who run the Oncotype test, so this is a valid recalculation of your recurrence risk, incorporating additional factors that are specific to you.
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@beesie Thank you for responding. My score from Oncotype was actually 29, I think I read your post about the RSPC model and was very intrigued by it. I will go back and re-read it again. This is such a difficult decision because, as you know, chemo has significant impacts and this result was so unexpected. I have called the Oncotype team several times and they standby their numbers but I will definitely ask my oncologist to run the Oncotype RSPC model. Is there anything else that you would recommend? Should I run the Mammaprint as well? Thank you so much for your feedback.
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The ER and PR percentages can also be a factor in the score. My wife is PR+ on the surgical pathology, but only 5% positive. She had a 6mm tumor, grade 1. Both MOs we consulted said the low PR is what likely caused her score of 23.
I also asked if a delay in sending the sample made a difference to the score and both dismissed this based on how the tumor is stored and preserved. My wife’s was sent to Onco three weeks after surgery because of miscommunication between the surgeon and MO.
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Zek, 4 days doesn't seem long enough to get it out of your system especially if you took it for a few weeks. Good luck trying the Tamoxifen. That is all we can do is try and hope for the best.
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Noone, definitely, definitely get the RSPC test and if your oncologist doesn't seem interested in ordering this test, demand it. It's a very good test. Good luck with this.
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Definitely not disagreeing with the great advice to follow up for more info. But also - a case like yours (if it's correct) is exactly the kind of thing that oncotype is meant to catch! If it always aligned with clinical risk factors, there would be no benefit to this fancy genetic test.
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Salamandra, the Oncotype RSPC model uses as it's base the Oncotype score, and then refines the recurrence risk based on clinical and pathological factors. So the model isn't ignoring the Oncotype results but is building upon them. The Oncotype RSPC model personalizes the recurrence risk that is associated with the Oncotype score. But it fully accepts the score.
The Oncotype score is derived from a detailed genetic assessment of the tumor - in other words, everyone's score is based on the genetics of their tumor. The 9-year metastatic recurrence risk that is associated with each score comes from research studies that tied long-term outcomes to patient's scores. So everyone (within each of the two age groupings) with the same Oncotype score receives the same recurrence risk; this recurrence risk is an average, compiling the results of everyone in the study and mapping the results to the Oncotype scores. If a someone presents very differently than the average of everyone in the study then it makes sense that the recurrence risk associated with the average might not apply to that individual. This is precisely why the Oncotype test is not recommended for people who have tumors that are smaller than 5mm - because the study included no patients with such small tumors.
Noone's tumor was 0.8cm. Within the TAILORx study, the average tumor size was 1.75cm; for those with scores of 26 or higher, the average size was 1.88cm. Noone's tumor was grade 1. Within the TAILORx study, only 26% of the tumors were grade 1; for those with scores of 26 or higher, only 6.5% had grade 1 tumors. Noone's age is 60. Then average age of participants in the TAILORx study, in the 'age 50 & over' subgroup, was under 60. Even with identical Oncotype 29 scores, would we expect two patients, one age 52 with a 2cm grade 3 tumor, and the other age 60 with a 0.8cm grade 1 tumor, to face the exact same recurrence risk? Obviously the Oncotype people don't think so, since they make the RSPC model available to oncologists.Discordance Between Oncotype DX Recurrence Score and RSPC for Predicting Residual Risk of Recurrence in ER-positive Breast Cancer https://link.springer.com/article/10.1007/s10549-017-4514-z
"In node-negative patients, RS can be integrated with clinicopathological parameters to derive RS-pathology-clinical (RSPC) that improves prognostic accuracy." *Note: RS stands for Recurrence Score, i.e. the Oncotype score.
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Risk of Recurrence and Chemotherapy Benefit for Patients With Node-Negative, Estrogen Receptor–Positive Breast Cancer: Recurrence Score Alone and Integrated With Pathologic and Clinical Factors https://ascopubs.org/doi/10.1200/JCO.2011.35.3714
"In summary, RSPC risk assessment integrating RS with traditional pathology and clinical measures adds significant prognostic information to RS. RSPC can aid in making chemotherapy decisions by refining assessments of recurrence risk where RS and traditional measures are discordant, especially with intermediate RS, by reducing the number of patients classified as intermediate risk and enhancing confidence in the integration of RS with traditional measures."
Edited to add: The Oncotype RSPC model doesn't need to be ordered. Every MO should have access to it on their computer, directly from Genomic Health. It takes no more than 2 minutes to input the variables (Oncotype score, patient age, tumor size, tumor grade, whether the patient will be taking an AI or Tamoxifen) and the new recurrence risk is immediately calculated.
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Beesie (and anyone else who's interested) per your comment copied below -
Neoadjuvant endocrine therapy does not impact the Oncotype score directly, as the protocol is to use tissue from the original, pre-treatment biopsy in that situation. It is possible that over the months of treatment prior to surgery the tumor biology could change if the tumor is adapting to treatment, which I suppose could theoretically impact the practical accuracy of the Oncotype's predictions. With a grade one tumor I think that is probably fairly unlikely.
This information is based on information provided to me by 3 different oncologists several years ago.
I hope this helps!
"I don't know if having started on endocrine therapy prior to surgery would impact your tumor biology and therefore impact your Oncotype score. I imagine it would, but that's just a guess. And from what others here have said, it is possible that the time between surgery and sending in the sample for Oncotype testing could also have an impact, but again I don't know. While there is evidence that this may be an issue, I don't think it's been proven (yet)."
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Hopeful, thank you. That's really helpful information.
In Noone's case, the question is whether the tissue sent for Oncotype testing was from her biopsy - my interpretation from her post was that it was a surgery sample, but this should probably be asked and confirmed.
And for anyone else who finds themselves in a situation where endocrine therapy was started prior to surgery, it will be important to specify that biopsy samples be used for Oncotype testing. There are a lot more people who are in this situation today than would usually be the case because many surgeries were delayed due to Covid-19 and patients were put on endocrine therapy to hold them over until surgery.
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Hi Zeke here. Well I took all 3 hormone therapies EXCEPT Tamoxifen. I could not take them the joint pain was severe and I mean severe I could not walk I was hobbling like a cripple. It was incredibly painful. I did give them my best shot one for 6 months one for 2 months and one for 3 months all with the severe side effect. Its just my body I guess. Now the next and last one I will be trying is Tamoxifen. I am waiting for the Femera to get out of my system for a month and am waiting to walk normally I am sill in severe hip joint pain from it.
My oncologist told me Tamoxifen will not give me that severe joint pain, but I read it causes bone pain what's the difference?
Anyway I will give this a shot also. And wanted to tell you I did try ibuprophen, Tylenol etc. to relieve the joint pain but it did not phase it.
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Hi I said a month in my post so I am good to go but have been on Tamoxifen now for 6 months with creeping side effects after all that time!
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I found this thread applicable to me, since I am Oncotype 28 and undecided on chemo. There isn't one place on this site to look for Oncotype score information, the searching takes up a lot of time.
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