I think Oncotype DX is a SCAM!!

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  • peppopat
    peppopat Member Posts: 90
    edited January 2016

    Update: I am three months short of 5 years and I still am disease free and not looking back.

    Happy

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

    Hi peppopat:

    That is good news!

    FYI, current NCCN treatment guidelines for breast cancer (Version 1.2016) for hormone-receptor positive, HER2-negative disease only include the OncotypeDX test as an option to be considered for Tumor >0.5 cm for ductal, lobular, mixed and metaplastic histologies. Interestingly, the test is not included for tubular and mucinous types, which are considered favorable histologies. In fact, current guidelines do not include adjuvant therapy for tubular disease that is ER and/or PR positive, pN1mi (≤2 mm axillary node metastasis) and tumor <1 cm: "No adjuvant therapy". Thus, your decision would appear to be within treatment guidelines even today which is always reassuring.

    The inclusion criteria for the recent TailorX trial incorporated NCCN guidelines in their patient selection and provided:

    "Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy,(21) including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both)."

    Please note that I am just a layperson, so anyone interested in the OncotypeDX test for invasive disease should always consult with their Medical Oncologist for up to date professional advice about eligibility and whether the test may be valuable for decision-making in their particular case.

    BarredOwl

    [Edit: Not sure how the guidelines apply in the case of neo-adjuvant endocrine therapy, which below you indicate you had.]

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    Peppopat, congrats on not needing chemo or rads. Did you get tamoxifen or an AI, or did you just have surgery? Just curious.

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  • BethL
    BethL Member Posts: 286
    edited January 2016

    barcelonagirl- my test results for oncotype were the same, 21. I only had one area of idc 7mm but this was my 2ND cancer.....first one 10 years ago. I wasn't offered mammaprint. Honestly don't even know what that is. Now I'm worried. The suggested plan was no chemo, OS, and AI with Prolia. How do you get that test done, does insurance cover it?

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  • BethL
    BethL Member Posts: 286
    edited January 2016

    I did read today that OS and AI were "at least equivalent to CMF chemotherapy in premenopausal women with hormone receptor positive breast cancer". Just not sure if going through chemo would help me more than it would hurt. I guess we never know for sure what to do sometimes. Still concerned though.

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  • peppopat
    peppopat Member Posts: 90
    edited January 2016

    I did tamoxifen for 4 months before my surgery. Then, after surgery, I did Femara for about 1.5 years. Because of the side effects I chose to call it quits. Had no quality of life until after I quit taking that stuff.

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

    Peppopat, my report says based on 651 sample size. My score was 34, I wasn't convinced, also results are based on taking tamoxifen not AIs. I had a grade 2 er+ pr-. My mitotic rate was 1 of 3 on both tumors.

    4 years so far so good

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  • LesM321
    LesM321 Member Posts: 2
    edited July 2018

    I know this is an old post. But how are you doing? I just received an ONCO of 38. I am ER+ PR- her2- neg lympnodes. Has the ONCO improved in two years since this post? I too and questioning the reliability of this test. See the Oncologist next month to discuss options.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2018

    I wouldn't take it to the bank that is for sure. Data just doesn't hold up. We need to be updating the information with actual cases more than a trial study.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited July 2018
    Its wonderful that Meow had a higher Oncotype score and is doing well years later. On the flip side my score was 42 with Stage 1 “garden variety” ER+ IDC; after a local recurrence four years later I’m now Stage IV with ogliomets (bones). Based on the Oncotype test my chance of recurrence with chemo and Tamoxifen was 28%. I did chemo both times, tried Tamoxifen first time around (had horrible SEa after 8 months and stopped, recurrence was triple negative). The test has been researched and validated, but I agree we can always learn more as time goes on - look at the TailorX study on intermediate scores.

    From my perspective it’s a valuable tool in our arsenal of testing that gives us more information than just Stage and grade. I appreciated having a deeper understanding of the genomics of my cancer, and it helped me make treatment decisions. It can’t predict everything with 100% certainty - heck, given my Stage/grade I wasn’t supposed to recur at all - but it’s good information.
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  • Amica
    Amica Member Posts: 488
    edited July 2018

    I probably shouldn't comment since I don't know much about this test, but as a former researcher/statistician who worked as an epidemiologist, to me if something shows that you have a 1 % lifetime chance of developing a recurrence for example, that is still quite high. So I would take a measured look at the statistical probability of risk into account in treatment decisions, and not skip treatments just because a test showed I had a low risk of recurrence. I would just maximize all my treatment possibilities. Probabilities are just that. You might well be that one woman in a thousand who will develop a recurrence if you skip a particular treatment. Statistically, that treatment may not be necessary for the other 999 women, but for you it could be.

    I had all the treatments available to me at the time when I first had breast cancer 20 years ago. I WAS at low risk for recurrence. There is a fairly low probability of having a recurrence after 20 years seemingly free of disease, but that's the situation I seem to now find myself. :(

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  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2018

    My report says sample size was 651, and based on taking tamoxifen not AI drugs which work differently. I am a mathematician. My cancer was idc with lobular features and ILC er 95% pr 0%, a small subset of the population. Not convincing, in the day of information collection you would think more data would be considered. I disagree that this has been "researched and validated", pretty weak if you ask me.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited July 2018

    My understanding is “your sample size” is samples with the same makeup as yours, not across the larger sampling as a whole. My appreciation of the testing also comes from how it’s performed, looking st more than just a small slice under a microscope. My path sample was “>75%” ER+ and “50%” PR+ but Oncotype showed 50% ER+ and 0% PR+. Because BC isn’t heterogenous we can’t get the full picture of the genomic make-up of our tumors under a microscope.

    Given the years of extensive research and validation of this test, Meow, I don’t quite understand your hesitation, but I acknowledge your right to believe what you will. The information gleaned means a great deal to some of us.
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  • Murfy
    Murfy Member Posts: 342
    edited July 2018

    OncotypeDX has since been validated many times. It remains an important prognosticator. However, it does remain unclear to me if in all these studies, including TailorX, 'early breast cancer' includes all types of BC or just IDC. The following link is to a nice synopsis of use of Recurrence Scores in recent clinical studies, many of which include the use of AIs:

    https://www.dovepress.com/spotlight-on-the-utility...


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  • mysticalcity
    mysticalcity Member Posts: 206
    edited July 2018

    I also am not a statistician, but agree with Meow13 that the amount of data and lack of clarity on this test seems questionable at best because of the low sample size and that it is not based on current treatment of AIs most post-menopausal women are now getting. I think everyone needs to evaluate and make decision that seems best for them. Although I am not sure maximizing all treatments is always best. Because some studies have shown even chemo can inadvertently encourage cancer growth, outside of the secondary cancers.

    "Nelson and colleagues examined cancer cells from prostate, breast and and ovarian cancer patients who had been treated with chemotherapy, and found specifically, that when the DNA of fibroblasts near the tumor is damaged by chemotherapy, they start producing a protein called WNT16B in the microenvironment of the tumor. And, they also found, when the protein reaches a high enough level, it causes cancer cells to grow, invade surrounding tissue, and resist chemotherapy."

    Amica, my friend like you had all the treatments available to her at the time when she first had breast cancer 24 years ago. She had mastectomy, radiation, chemotherapy and even a bone marrow transplant. Not quite sure why they did transplant, but her treatment was aggressive. Followed by 5 years tamoxifen. She also was told she was at low risk for recurrence, but she now has had a recurrence to bones after 24 years. So at the end of the day I don't think any of the studies are long enough and robust enough to know who will have a recurrence or not.

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