Topic: Long term "high oncotype test" survivors

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk or high risk of developing a second breast cancer.

Posted on: Aug 8, 2008 09:54AM

Posted on: Aug 8, 2008 09:54AM

1OUgirl wrote:

Is there any long term survivors who have had a high oncotype score.  I know that this test is relatively new but I also know that it has been on the market at least 4 years.  So I know that "long term" regarding this test isn't very long term.  I had it done 3 years and 4 months ago.  My oncotype score was 52.  My onc told me that the test had been on the market only about 8 months.  I'm just curious about others who have had an extremely high score and are still clear (so to speak).  I am doing great with no signs of any kind.  Is there alot of others out there?  By the way, I love this site.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 14, 2016 04:18AM thinkingpositive wrote:

I wonder if I would be eligible since I finished chemo 13 months ago. My mo does no scans unless symptoms. Didn't have any scans before either except the MRI when diagnosed. Didn't even really do into details about percentages either. Did your MO give you percentages of reverence down the road. I really thought that being 13 months out I would worry less and less but it seems to be the opposite for me.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Mar 14, 2016 07:16AM cajunqueen15 wrote:

I think no. I'm pretty sure you have to start right away. I pinned my MO down for the numbers. He said 25-30% chance of mets within 10 years. I think it's a little higher because I was diagnosed post partum, which is a negative prognostic indicator. My cancer was freakishly aggressive.


35 @ dx. BRCA2. Disciple, wife, mother of twins (6) & son (4), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Surgery 8/27/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/18/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Chemotherapy AC + T (Taxol) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Mar 14, 2016 03:20PM loral wrote:

Interesting read

Gene Test May Spare Some Breast Cancer Patients From Chemo

http://click.messages.medicinenet.com/?qs=a984fa4b...

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/8/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Hormonal Therapy 12/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 14, 2016 05:04PM roserosie wrote:

Is your oncotype your ki-67

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Mar 14, 2016 05:13PM - edited Mar 14, 2016 05:16PM by BarredOwl

Hi roserosie:

No, ki-67 testing from your pathology report is done by immunohistochemistry (IHC) for a single protein, and it is not the same thing as the OncotypeDX test for invasive disease. The OnctoypeDX test evaluates gene expression from 16 test genes and 5 controls to inform decision-making about chemotherapy in certain patients.

From another thread it looks like you are triple-negative. If so, you would not be eligible for the Oncotype test, which is only indicated in hormone-receptor positive, HER2-negative patients.

Formal Eligibility: http://breast-cancer.oncotypedx.com/en-US/Professi...

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Mar 14, 2016 06:05PM roserosie wrote:

Barredowl


Thank You for the information.



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Mar 14, 2016 08:40PM - edited Mar 14, 2016 08:42PM by chisandy

The article is pretty much useless. It reports about a “new test," and then identifies it as Oncotype DX--which has been around since at least 2008. The study, done in Germany, was small--not nearly as extensive as the TailoRx trial, results of part of which were released nearly 6 months ago. The methodology was faulty--even though the TailoRx data reported thus far on women with scores of 10 or below, it went on to say that there weren't enough instances of recurrence in women with scores 11-17 (nor in the official “intermediate" range of 18-30 as defined by GenomicHealth, the test's developer) regardless of chemo vs. no chemo. But the mutterings that “the ranges are about to change" are no doubt fueled by this flawed German study, which gave the 10-and-below group only endocrine therapy, but the 11-and-above cohort (85% of the study's participants!) was assigned randomly to, and I quote, “one of two chemotherapy regimens." In other words, nobody with a score of 11 and above got only endocrine therapy. The lead doctor in the German study described the 10-or-under-score women as “very low risk" (emphasis mine), which is NOT the same as saying that 11-17 is no longer part of the low-risk group but now “intermediate."

This is irresponsible lay medical reporting at its worst. And it's unnecessarily scaring the crap out of those of us scoring 11-17 who depended on our MOs' assurances that we were low-risk for recurrence/chemo effectiveness and that chemo's risks outweighed its benefits. Given the choice between a poorly-written and chronologically inaccurate layperson-oriented medical newspaper article, vs. the standards set by the developer of the test and the advice of an experienced MSK-trained MO at the cancer center of a major teaching hospital system, who are you gonna believe? I will wait for the next leg of TailoRx to be released (and ONLY if it measured the stats of 11-17-scoring women receiving endocrine therapy alone) before I start considering chemo. (BTW, OncotypeDX defined “endocrine therapy" as Tamoxifen; my MO told me that recurrence rates for AI therapy are even lower).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Mar 15, 2016 05:04AM loral wrote:

Oncotype DX only bases there study using Tamoxifen....

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/8/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Hormonal Therapy 12/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 15, 2016 02:25PM Moondust wrote:

I will preface by saying that everything I say is based on what I was told by my MO, not by anyone at Genomic Health. My MO says that Genomic Health has new tools available to doctors on their website. She used one of the tools to calculate that on average, my 17% recurrence risk with tamoxifen would be reduced to 14% with AI's. There was another Genomic Health tool where she plugged in my tumor size, grade,onco score and my age to come up with yet another recurrence risk figure of 7%. It is based on studies listed on the printed out report. There are also error bars, which state a confidence level. For example, the 17% figure I was given can be anything from 12% to 21% with 95% confidence. So really, my recurrence risk with a score of 26 could be as high as 21%.


Alice. DX at 61. Onco score 26. Ki67 30%. Dx 12/7/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/15/2016 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/22/2016 Whole breast Hormonal Therapy 4/21/2016 Chemotherapy 6/7/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 15, 2016 03:00PM thinkingpositive wrote:

Moondust....wow that's making me a little more nervous. That's percentage for a grade 1 and no node positive. I guess thats why my mo didn't bother to send mine out for oncotype as he said it was probably going to be high. He probably did not want to have to share with me the percentages.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/22/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Silicone implant, Tissue Expander; Reconstruction (Right): Silicone implant Chemotherapy 12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)

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