Oncotype Dx Test Anyone?

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited March 2014

    LidzyWidzy - I too have IDC and LCIS.  Are you planning to have radiation treatment?  If so, talk with your radiologist about the effect of radiation on LCIS.  

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2014

    Lidzy - the spreadsheet predicted 31 for me, actual 39.  (ER 95% PR 5% Ki67 60%  Nottingham Grade 3  score 8 of 9)

  • LidzyWidzy
    LidzyWidzy Member Posts: 22
    edited March 2014

    Hi - I actually have some confusion about the LCIS which was reported on the biopsy from late January but not on the early March post-lumpectomy path report. I asked the surgeon about this on Friday and he stated that perhaps there was just a smidge of LCIS and the biopsy itself removed it. I wonder if the Oncotype report will address the type of cancer?

    Yes, I am on board for radiation but don't know what the impact of the presence of LCIS has with regard to rads. If I even have/had it . . . 

    Kam170 - thanks for sharing your scores. Bet that made taking on the chemo "easier." (you know what I mean . . . ) Looks like lots of you end up with slightly higher than the spreadsheet scores. If I count my Nottingham as a 5, I get 19. If I count my Nottingham as 3, I get 14+. I have already decided that if it's 18 or above, I will take chemo. Will report back the actual score when it comes in later this week.

    You all are the best - thank you!

  • Blueberry4
    Blueberry4 Member Posts: 98
    edited March 2014

    Hi all, I used the spreadsheet too and came up with a best case oncotype of 26 and worst case of 28. The actual score came in Thursday at a 46. Wow! I am ER 100%, PR- , HER -, KI67 55%. I won't see my MO until April 1; my scores were reported over the phone.  I have a lot of questions about % chance of recurrence and luminal B.  It's definitely chemo for me, but I don't know what protocol or how many cycles. Thanks all for sharing your experience. I have been feeling quite alone with such a high score. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    blueberry...don't lament and feel lonely with a higher score.  The good news is that there are better treatments today than a mere decade ago and mortalities have greatly improved.  Furthermore, it is more frequent to see sisters here with intermediate scores debating what they should do.  Higher score sisters would be less likely to post, because chemo would be a given.  Good luck!  I wish you well with active treatment and beyond!

  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2014

    blueberry - don't feel alone, my score was 42 and my stats are similar to yours.  I am also Luminal B.  We gave a good response to chemo; long- term prognosis can be difficult.  I don't gave my Ki-67 but can be sure it's similar to yours too.  Good luck as you move forward- we're here for you!

  • Blueberry4
    Blueberry4 Member Posts: 98
    edited March 2014

    Thank you for your responses. I am feeling much better about it all. Is anyone else starting chemo in April?  Nancy, how many cycles of chemo did you have?

  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2014

    Blue, I had 4 dd cycles of AC (every two weeks) and , as part of a clinical trial, 12 Taxol which were also dose-dense and given every two weeks instead of once a week (same length of time, just twice the dose half as often).  I was made aware that dd Taxol has a slightly lower efficacy than weekly Taxol but I was willing to try it.

    I'm now 20 months out from end of treatment, and except for the daily worry of recurrence I'm doing very well!

  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2014

    I was blessed my score was low but I can see those of you with higher scores feel a sense of relief because your treatment plan is pretty much a slam dunk. Having to make that decision to me just adds more stress and anxiety that none of us need. The Oncotype test is a great tool for Oncologists. It saved me from chemo. I remember when I got THE call from my BS' office with the results of my test I asked her what the highest score they had from the test and she said 59. Good luck with your treatment plans. I did 33 RADS treatments and did fine with them. Diane

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    Edwards....you just reminded me of an important point...Oncotype DX test should only be done for one reason.  If patient and clinician wish to consider forgoing chemo, then the test is indicated.  For those who believe they "need"chemo, the test can be moot.  So there can be natural selection going on before the test is even done.  Once the decision is made to do the test, 40% come back with an intermediate score and sisters with those scores generally end up here questioning what treatment is right for them.  it's the occasional sister with a low or high score who will chime in.  Thankfully, more clinicians are using the Mammoprint test to gather more info once the Oncotype DX score indicates the intermediate range.  I'm pretty certain if one used the Oncotype DX test on more Grade 3 tumors, we'd see many more high Oncotype DX scores.  Again, to reiterate, thanks to better treatments, more sisters are surviving more aggressive tumors, so having a high Oncotype DX score isn't a death sentence.  The Oncotype DX test just helps clinicians and patients make a more informed treatment decision.  And, adding the Mammoprint test, especially for the outliers, should make active treatment decisions a drop easier.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited March 2014

    To everyone waiting for their Oncotype results - I started this thread when I was in your shoes and my anxiety was overwhelming.  Tomorrow is my final chemo infusion.  With a score of 24 I am really glad I had the information and did the chemo.  The waiting for the results is worse than chemo.  

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited March 2014

    Warrior Woman, hello and good to hear that you are doing well.  Waiting is the absolute worst part of this KRAP!  Once you make a decision, it's just so much easier.

      For me, it was comforting to do chemo.  I am 7 months PFC and doing well.  Just had my first follow up mamm and doing good with a follow up with the breast surgeon this week followed by a recheck from the radiologist.  I am in a fitness program and have almost lost the extra 10 lbs I have been carrying around for the last 10 years, blood pressure and cholesterol are down.  Somehow, my fitness program has morphed over to my daughter and sister and I even have signs that my husband will be joining us.  I have a super-cute pixie haircut that I plan to keep....looks like Judi Densch's "do" in the Bond movies.  Love, love love it.

      Tomorrow is a big day for you!  Be well.

    MsP

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2014

    Voracious - I would say it is just as important to do the Oncotype score on a grade 3 as a grade 1 and there was never any question from my MOs that I would get the Oncotype test as a grade 3.  Important because even a grade 3 could get a low score and avoid the "presumed" chemo (though that conflict between grade and score presents another dilemna for the patient).  That is actually the marketing  line for Oncotype scoring - to give chemo only when needed and the acknowledgement that the Nottingham grade isn't a perfect predictor.

    Additionally, my MO is giving it to all of her patients that are node positive too just to give her a better understanding of the aggressiveness of the tumor.   And since even a grade 1 can get a high score, she probably gives it to all her node negative ER+ patients too - but that kind of goes without saying.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    kam...my point is that sometimes a Grade 3 will get a low score and then some sisters here will second guess whether they should still have chemo.  I think, based on the NCCN guidelines regardless of grade, one should have the Oncotype DX test if their tumor is greater than .5 cm.  Bear in mind, the Oncotype DX is merely one tool to use in making a decision if chemo is right for you.  I think almost 10% of Grade 3 tumors get low Oncotype DX scores, so sisters need to be mindful of that.  So, I stand by what I say, if you have an ER positive Grade 3 tumor larger than .5 cm and you WANT chemo, having the Oncotype DX test might not be as important.  I know if I had a small Grade 3 tumor, I would want the test....my physician also felt the same as your doctor.  They wanted confirmation of the nature of the tumor.  Keeping that in mind, we've had a number of sisters here with large Grade 3 tumors, node negative with low Oncotype DX scores that were STILL recommended chemo...

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    Kam...here's an interesting study regarding the use of the OncotypeDX test and how it affected decisions.  It seems that, overall, quite a number of low and intermediate grade patients had high OncotypeDX scores and 1/3 of patients with Grade 3 tumors that were smaller than 1 cm had high recurrence scores... yet only 68% of those with high scores chose chemo.  Likewise, analysis found that in younger patients, despite low recurrence scores, 33% chose chemotherapy or ovarian suppression.

    http://ecancer.org/journal/7/pdf/380-the-impact-of-the-oncotype-dx-recurrence-score-on-treatment-decisions-and-clinical-outcomes-in-patients-with-early-breast-cancer-the-maccabi-healthcare-services-experience-with-a-unified-testing-policy.php

    "Next, we evaluated the treatment approach in 293 patients aged ≤ 50 years, and assessed physicians’ choice of chemotherapy and/or
    LHRH agonists in addition to hormonal therapy with tamoxifen (LHRH agonists are considered as a potential substitute for chemotherapy
    in ER+ premenopausal women [12–17]) versus none. In this age group, overall, a more aggressive treatment approach was noted, and
    even in the low Recurrence Score group, close to one-third of patients received chemotherapy and/or LHRH agonists. Still, the proportion
    of patients receiving LHRH agonists and/or chemotherapy varied significantly across Recurrence...."

    -----------------------------------------------------------------------------------------------------------------------------------------------

    According to this study... 20% of patients with Grade 3 tumors had LOW recurrence scores...and according to the researchers, they hope that once the TailorX trial is completed they will be better able to assess the outliers...However, it appears until that is known, more younger patients will continue to get more aggressive treatment.....

    "The rationale for the MHS policy is to identify patients whose lives may be saved by early chemotherapy use and who may not otherwise be

    considered for chemotherapy by the treating physicians. Indeed, follow-up data on this cohort, despite being limited (median of 26 months),

    with the various treatment approaches as detailed, showed only four locoregional recurrences, one in a patient borderline for eligibility and

    another in a noneligible patient. The MHS policy excludes patients with large Grade 3 tumours based on findings from the original Paik

    et al [1] report that assessed 668 tamoxifen-treated patients in the NSABP B-14 study and showed that high grade still had significant

    prognostic value in multivariable analysis, including the Recurrence Score. While in that report, concordance for histology grade was only

    59–65% between two pathologists, it was highest for poorly differentiated tumours (kappa, 0.61) [1]. It should be noted, however, that low

    Recurrence Score may occur in about 20% of patients with Grade 3 tumours [1, 5], and that a Recurrence Score–pathology-clinical (RSPC)

    assessment was found to be more prognostic for distant recurrence than Recurrence Score alone [23]; nonetheless, the NSABP B20 data

    analysis suggests that Recurrence Score is still the best predictor of chemotherapy benefit (RSPC was not predictive of chemotherapy

    benefit [23]). We expect the data from a prospective trial that incorporates both Recurrence Score results and grade (the ongoing TAILORx

    trial), to best define their relative significance. Another molecular classification method using genomic grading index also supports the use

    of molecular classification mostly in Grade 2 tumours [24, 25]. To overcome potential inaccuracies in Grade 3 tumour readings, the MHS

    policy allows pathological reviews of all large Grade 3 tumours and approves Oncotype DX testing if one of the reviewers considers the

    tumour to be of lower grade...."

    ------------------------------------------------------------------------------------

    So, what this study is saying is that it appears that with older patients, the Recurrence Score is more helpful in deciding whether chemo is necessary.  However, it also shows that MORE people should have chemo based on high recurrence scores, but are not choosing it.   However, with younger women, despite low recurrence scores, patients are more likely to still receive chemo or ovarian suppression.  The good news, in the few years of the study, very few patients died and they usually died of other causes.

    I think until the results of TailorX are known, for those patients in the gray area, or outliers, those with Grade 3 tumors with low scores or Grade 1 with high scores, it might be a good idea to have the additional Mammaprint as the tie breaker.  I think all of these situations should be explained to a patient before they agree to have the Oncotype DX test, because there is a distinct possibility that the results will be ambiguous.  In fact, I sometimes regret having had the test and knowing that my score is 15.  For sure there was relief in knowing that the risks of chemo outweighed the benefit.  And it is also nice to know that for mucinous breast cancer the "average" score is 15, so I fit  "nicely" into the statistics and confirmed that my Grade 1 tumor was at low risk of recurrence.  However,  due to my age, I was informed that although the Recurrence Score was affirmative of my pathology report, I was still encouraged to be a little more aggressive with my treatment.  So, at the end of the day, I'm not sure that the Oncotype DX test brought much to the table except proving I wasn't an outlier.    I was told in advance of the test to do ovarian suppression and 10 years of endocrine therapy and this was BEFORE the Atlas preliminary results were known.

    Bottom line, regarding the above study,  there's still more people who should be getting chemo based on the Oncotype DX test who aren't, and there are young women, who despite low scores are getting it.......

  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2014

    My understanding (and please correct me if I'm wrong) is that pathological grade can be subjective - that is, cancer could be a grade 2 or a grade 3, depending on the pathologists' interpretation of certain characteristics.  In my particular instance my IDC was grade 2 (and my pathology unit gave me as little information as humanly possible, all it says is, "Grade: 2" so I can't add up all three factors to know where in that intermediate grade...but I digress...) but my Oncotype score was 42 (and no, my pathologist didn't do a Ki-67).  Without the Oncotype score my MO suggested that I "try to make it through" 6 CT treatments (but they'd be happy if I could finish 4) - almost like a consolation prize.  The 42 bought me the full AC/T.  So - all of that being said - which is a more accurate predictor of the aggressiveness of a cancer?

  • LidzyWidzy
    LidzyWidzy Member Posts: 22
    edited March 2014

    Good morning – 

    Interesting discussion about Oncotype scores and tumor grades. This is all brand-new to me and I learn a lot from all of you.

    To circle back to my anxiety-ridden post from a few days ago, I got the result from the Oncotype Dx
    yesterday: 14. That’s puts the “average rate of distant recurrence” at 9%, with
    a margin of error of 3%. I should feel elated but, somehow, a 1 out of 10
    change for recurrence, WITH the AI’s, is still troubling – like, isn’t there
    something else I can do to lower these odds even further?

    I will meet with the MO tomorrow to discuss this more fully.
    Part of me wants to throw everything I can at this BC and part wants to go
    straight to rads so I can get on with my life.
    I need to more fully understand the risks involved with chemo, besides
    hair loss and serious discomfort during the process, to appreciate why lowering
    one’s odds by 2 or 3% does not seem like a good bet.

    Regarding the spreadsheet: since I did not know my ki67
    score, filling in the numbers took some guesswork. My results ranged from 14 on
    up to 19 depending on how I characterized (guessed at!) various factors – so 14
    was smack within that range. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2014

    Lidzy - I think the nature of this thing is such that whatever we "throw" at it we're still going to have that fear of recurrence once we're done. I know I OBSESSED about the remaining number for months. People tried to tell me to focus on the big number and not the small, but it was something I just had to work through on my own. Time helps us to learn to live with it. I tell myself I've done all I can, the rest is out of my control, so I don't really sweat it anymore. If it comes back it comes back. I will not allow that fear to steal anymore time from me.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    In the B-14 analysis, there was pathologist agreement in 59-65% of the cases.  The researchers also mention based again, not on this study, but based on the B-14 analysis that there was the most agreement when it came to Grade 3 tumors.  Again in this study 20% of the Grade 3 were found to have LOW recurrence scores.  Also noted, and this speaks to what I mentioned to Kam, the authors of this study hark back to Genomics original study and mention, those with LARGER Grade 3 tumors might be opting OUT from having the Oncotype DX test ("self selection bias"), so that might be the reason behind so many small Grade 3 tumors having low recurrence scores in this study.

    The conclusion that I draw from THIS study is that there are still a large number of patients forgoing the test because they have larger Grade 3 tumors and are choosing chemo and make the results of the Oncotype DX test moot.  I can also conclude that pathologists opinions vary more so with Grade 1 and 2 tumors.  And, that based on this study, the Oncotype DX test is identifying more patients who SHOULD be getting chemo.

    Lidzy, I'm sure you will arrive at an active treatment plan that you are comfortable with!  Since you are post menopausal, you might wish to discuss adding Zometa to your treatment plan.  Although it is still being studied and is not recommended in the NCCN guidelines, there is growing evidence that it helps reduce mortality in ER positive, postmenopausal patients.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2014

    VR - Perhaps you know something about this question. The oncotypedx assumes Tamoxifen use. (Essentially 50% reduction in recurrence for premeno women, less for perimeno, and post.)  My Onc said AIs reduce recurrence between 50 - 70 %. How would the use of an AI affect that oncotype number - or would it?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    The OncotypeDX test only bases it's recurrence score on the use of Tamoxifen.  The reason being, is that this test was designed years ago, using data collected from before as well as after Tamoxifen was determined to be the Standard of Care since it was the ONLY drug available BEFORE AI's were used.  Any statistics that are mentioned with respect the Oncotype DX test and  AI's, has NOT been quantified.  If you look at the Atlas study, all of the data was based on taking Tamoxifen.  We still don't have any LONG TERM studies quantifying the long term benefit of an AI over taking Tamoxifen.  Short term studies DO confirm a small superiority of an AI over Tamoxifen, HOWEVER....this is a big HOWEVER, this is all still being studied.  If you are interested in the most up-to-date information regarding Tamoxifen and AI's, it can be found in the footnotes of the NCCN guidelines...somewhere around page 98 in the professionals' version.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2014

    ....I just was reviewing pages 98 and 99 and it mentions that using the Oncotype DX test on tumors that have unfavorable characteristics and are larger than 1cm is still an area of controversy.  So, I think there is probably still a lot of self selection bias going on with respect to using the test which the Israeli study mentions.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited March 2014

    Lidzy, hello.  I hope you are moving forward with your treatment decisions now that you have your Oncotype DX score.  I know exactly what you are feeling.  I did not get a low score but I can tell you I would not have been comforted to have one...especially when the science says that chemotherapy risks outweigh the benefits in those cases.  What we have to accept is that there is no CURE for breast cancer.  Chemotherapy just isn't proven to be effective with every person and every cancer.   But, if chemotherapy was 100% effective....no one would balk at losing their hair and spending more time in bed and the bathroom.   I guess I am glad that they aren't giving chemo and radiation to everyone....but we need more and better treatments.  That is what we should all be working on with our time and money.

    My onc says that despite lowering my recurrence risk from 16% to 13% by doing chemo, my recurrence risk is either 0% or 100%.  I am working to further reduce my risk by 1) limiting alcohol 2) good diet 3) exercise 4) weight control 5) take my AI every day 6) get good sleep 6) be kind to myself and others 7) spend time making me feel good...facials, pedicures, make up, new shoes, etc vacations,  as I can afford it. 

    You don't need chemo but there is a lot you can do hon, to improve your situation.

    MsP

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2014

    Thanks VR! You are a wealth of information. One cm certainly is not very big.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited March 2014

    I like your treatment plan, Ms. P!  As I move into this post chemo phase of treatment, I'm keeping this in mind.  I live in a rural area with limited services and just found a yoga class for cancer patients in walking distance from home!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2014

    lidzywidzey..... The choice is all yours, but I suspect they may steer you from chemo with that score. There are things you can do, the AIs give you a percent or so over Tamoxifen. Having ovaries out, or lupron also choices, and even zometa is a possibility. 

    2cm used to be a cutoff of sorts in Europe, but that is probably out of date.

    I suggest this to everyone in this boat, ask for the whole oncotype report with the graphs. 

    Seeing where I was on that chart really made a difference for me.

    Finally try both choices on for size, live with each one for a while, see how you feel. Good luck, it is a complex choice. 

    Oh and for me the chance of doing chemo with no benefit being so much larger than the chance of it helping me was the deciding factor. 

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2014

    Voracious - thanks for all of the info.  I will have to find some time to read as I brought home a new furrbaby and he is consuming my time!  

  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2014

    Amen Ms Pharoah... I actually got into a heated discussion with another lady on this forum concerning the "cure" or not for BC. She believes she is cured; her right to believe what she wants but the fact is there isn't one. We are all managing our BC. We can all read stats until we are blue in the face but that's all they really are. Of course we need a guide and something to feel optimistic about and for that some of us do feel less anxious...at least I do. I am not Pollyanna and I know that despite having an early stage cancer that 8% chance of recurrence doesn't preclude having the cancer come back. We can all make ourselves crazy by trying to decipher what the odds really mean, do everything right according to our doctors and it can still happen. I chose not to obsess about it anymore. Do I think about it every now and then - of course especially right before my the appointment with my Oncologist or my mammogram appointment. There are women on this board who have defied the odds both ways. The one constant is we are all doing all we can to keep the beast at bay. Diane

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2014

    edwards750 you are right.

    It's funny I can go quite a while un-worried, but then worry again.

    It has been a process.

    Like anything else over time we adjust to living with the risk.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited March 2014

    Hello, have any of you had any issues with insurance coverage for the test? I was shocked today to open the mail to find that Aetna denied my coverage, especially after Genomic Health had called me to discuss billing and told me it was approved.  I will start making phone calls on Monday but curious in he mean time if any of you have dealt with this and any words of wisdom?

    From what I can tell I was denied because of being node positive and in their eyes it wasn't necessary to determine my adjuvant care.  Bah!

    Ps. I did get my score from MO on Friday .  16, and entering Ponder Rx clinical trial.

    Thanks for your help.

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