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 12:54PM

Posted on: Aug 8, 2008 12:54PM

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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Oct 29, 2012 09:53AM QuinnCat wrote:

Rose - You wouldn't be classified TN with strong ER.  You are probably Luminal B (ER+ or PR +, Her2- and Ki67 > 13-20% << this is a vague classification).  When you say strong ER, what was the score on Oncotype?  I got RS of 39 with 9.0 ER (middling positive) and barely positive PR.  Your overal RS goes down the higher ER or PR is.  My Ki67 was higher than yours, 60%, so it seems odd your overal score (RS) is so much higher than mine, though that Proliferation Factor of Onco DX is not broken down for us to see.

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Oct 29, 2012 06:59PM Rose12 wrote:

Kam,

This is the results from Oncotype.RS score-61.  Distant recurrence rate=34%. Then it says it all drops once chemo is given.

E=10.2 postive(My first pathology report showed 97% from biopsy)

PR-less than 3.2 negative

HR 9.4 negative

Dx 11/30/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR-, HER2-
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Oct 29, 2012 08:29PM QuinnCat wrote:

RS 39  Distant recurrence rate = 27%

E = 9.0 (my first pathology showed 90%) positive

PR = 5.7 (my first pathology showed 5%) positive, but barely

HR = 7.9 (negative)

************

Rose - just for fun (humor me)  (7.9 - 5.7 - 9.0) = -6.8 (me)



Somehow it seems like having a stronger ER or stronger PR, than a mediocre and small one, would be a better thing (intensity).  Certainly 97% of cells staining ER+ is good.

(9.4 - 3.2 - 10.2) = -4.0 (you)

The more negative the better on ER,PR,Her2.....my Ki67 was 60%, yours 50%.... 



Just playing with ideas...obviously there are other black boxes that enter the final equation, but using my research, the biggest factor is Proliferation Rate which is often well proxied by Ki67.

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Nov 19, 2012 12:28PM tracy77 wrote:

I love this site too!!   I was an 11 year survivor until April 2012; lump on mastecomy breast, had lumpectomy and did onco type test.   Number high  34 and I am going through chemo now as a preventative messure....having alot of tingling/numbness in feet and hands not sure if I will do more chemo    good luck!!!!

Surgery 2/14/2001 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Free TRAM flap, Nipple reconstruction Dx 4/2012, DCIS, Right, 1cm, Stage 0, Grade 2, ER+ Chemotherapy 8/20/2012 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 12/3/2012 Breast
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Dec 11, 2012 02:57PM CherylinOhio wrote:

@Illinois Native You said  "he also said most recurrences of cancer happens in the second year"  Do you know if he meant the 2nd year from dx or the 2nd year from active treatment end?

Some days there won't be a song in your heart...sing anyways. Emory Austin Dx 3/29/2011, 4cm, Stage IIIC, Grade 3, 17/23 nodes, ER+/PR+, HER2- Chemotherapy 5/25/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/22/2011 Breast, Lymph nodes Surgery 3/19/2012 Reconstruction (right): Latissimus dorsi flap Surgery 9/18/2012 Mastectomy: Left; Reconstruction (left); Reconstruction (right) Surgery 12/20/2012 Prophylactic ovary removal Hormonal Therapy 1/2/2013 Arimidex (anastrozole)
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Dec 12, 2012 01:54PM - edited Dec 12, 2012 01:56PM by QuinnCat

Asked my MO when the clock starts ticking...she said "When the cancer is gone." Upon further questioning, she said, "After your BMX." I had chemo after that, so that wasn't part of the "treatment equation."

Interesting thing I read the other day...if your cancer does not respond to chemo or hormonal therapy (and apparently some don't, and I assume both have to be true), if you had done nothing, versus surgery, chemo, hormonals, you would live the same amount of time. That makes sense...the bigger shock is that some cancers don't respond to anything, which I probably knew about chemo, but only recently learned that even some ER+ cancers do not respond to anti-hormone medication.

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Dec 12, 2012 02:05PM CherylinOhio wrote:

Jeez, I hope mine has responded to all of the treatments.  I think my onc says time starts after active treatment ends. November 2012 begins my 2nd year out from active treatment. I believe this is also the most likely time for a reoccurence. YIKES!! I hope this year goes by fast!!  I am really feeling hopeless today.  Broke down and had onc presrcibe some xanax (spelling?) but he does not like that one so he scribes ativan.  Guess it will be Ativan Xmas.

Some days there won't be a song in your heart...sing anyways. Emory Austin Dx 3/29/2011, 4cm, Stage IIIC, Grade 3, 17/23 nodes, ER+/PR+, HER2- Chemotherapy 5/25/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/22/2011 Breast, Lymph nodes Surgery 3/19/2012 Reconstruction (right): Latissimus dorsi flap Surgery 9/18/2012 Mastectomy: Left; Reconstruction (left); Reconstruction (right) Surgery 12/20/2012 Prophylactic ovary removal Hormonal Therapy 1/2/2013 Arimidex (anastrozole)
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Dec 12, 2012 05:30PM QuinnCat wrote:

Cheryl - sounds like your MO says end of chemo and mine says after the BMX.  As much thought as my MO appeared to put into it, I'd probably go with your MO.  Other than that, when you say "2nd year," is that the start or end of the second year.  For example, if your chemo ended October 1, 2011, is the second year, as far as when recurrence is more likely, from Oct 1,2012 to Oct 1, 2013, or does the second year recurrence start after you've completed the second year, October 1, 2013?

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Dec 13, 2012 07:48AM CherylinOhio wrote:

Kam, I have seen it explained as the years after active treatment ends. So Nov 2011 until Nov 2012 is my first year, Nov 2012 to Nov 2013 is my 2nd. I have heard that the most likely time is the 2nd year, whether that is 2nd year after active treatment of from dx, I would assume that is from active treatment ending. The better part of 2011 I was doing chemo and rads. I just hope this 2nd year goes fast, I am not one to wish time away but I would like to make it thru this 2nd year unscathed.

Some days there won't be a song in your heart...sing anyways. Emory Austin Dx 3/29/2011, 4cm, Stage IIIC, Grade 3, 17/23 nodes, ER+/PR+, HER2- Chemotherapy 5/25/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/22/2011 Breast, Lymph nodes Surgery 3/19/2012 Reconstruction (right): Latissimus dorsi flap Surgery 9/18/2012 Mastectomy: Left; Reconstruction (left); Reconstruction (right) Surgery 12/20/2012 Prophylactic ovary removal Hormonal Therapy 1/2/2013 Arimidex (anastrozole)
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Dec 13, 2012 08:03AM - edited Dec 13, 2012 08:06AM by voraciousreader

http://jco.ascopubs.org/content/25/15/2127.full.pdf

Back in 2007, distinguished Sloan Kettering physician Dr. Cliff Hudis outlined the problem in clinical trials of calculating endpoints with regard to treatments.....

________________________________________________________________________________________

Proposal for Standardized Definitions for Efficacy End

Points in Adjuvant Breast Cancer Trials: The STEEP System

Clifford A. Hudis, William E. Barlow, Joseph P. Costantino, Robert J. Gray, Kathleen I. Pritchard,

Judith-Anne W. Chapman, Joseph A. Sparano, Sally Hunsberger, Rebecca A. Enos, Richard D. Gelber,

and Jo Anne Zujewski

A B S T R A C T

Purpose

Standardized definitions of breast cancer clinical trial end points must be adopted to permit the

consistent interpretation and analysis of breast cancer clinical trials and to facilitate cross-trial

comparisons and meta-analyses. Standardizing terms will allow for uniformity in data collection

across studies, which will optimize clinical trial utility and efficiency. A given end point term (eg,

overall survival) used in a breast cancer trial should always encompass the same set of events (eg,

death attributable to breast cancer, death attributable to cause other than breast cancer, death

from unknown cause), and, in turn, each event within that end point should be commonly defined

across end points and studies.

Methods

A panel of experts in breast cancer clinical trials representing medical oncology, biostatistics, and

correlative science convened to formulate standard definitions and address the confusion that

nonstandard definitions of widely used end point terms for a breast cancer clinical trial can

generate. We propose standard definitions for efficacy end points and events in early-stage

adjuvant breast cancer clinical trials. In some cases, it is expected that the standard end points

may not address a specific trial question, so that modified or customized end points would need

to be prospectively defined and consistently used.

Conclusion

The use of the proposed common end point definitions will facilitate interpretation of trial

outcomes. This approach may be adopted to develop standard outcome definitions for use in trials

involving other cancer sites.

J Clin Oncol 25:2127-2132. © 2007 by American Society of Clinical Oncology

_________________________________________________________________________________________



When I read clinical trials, I am looking for disease free survival from the time of the COMPLETION of active treatment.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)

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