Posted on: Aug 31, 2018 06:55PM
I recently had a bilateral mastectomy w/immediate DIEP reconstruction and I am currently awaiting an Oncotype report. My tumor is 2.3cm, Grade 2, ER+(95%), PR+(20%), HER2-, Ki67 10%, Mitotic 1. My breast surgeon is a researcher at a major teaching institution and she told me that proliferation (aggressiveness of tumor) is what drives the Oncotype score. I’ve read elsewhere on this site that low PR scores can drive the Oncotype score up as well. For those of you that had a Oncotype and your scores were intermediate or high, what attributed to your score?
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Sep 1, 2018 07:44AM moth wrote:
Have you seen the thread on the long term survivors with high oncotype? Many people there speculate on what caused their high score & you can yourself try to plot it out with their diagnoses. https://community.breastcancer.org/forum/85/topics...
Mine skyrocketed because Oncotype classified my estrogen as negative as it didn't hit their threshold even though IHC showed staining. There are other people on the board who had different hormone results on IHC versus Oncotype.
re your questions, I suspect that in addition to the Grade & the PR status, the strength of ER also factors into it as it's trying to predict how well endocrine therapy will work.
Sep 1, 2018 01:49PM - edited Sep 1, 2018 04:54PM by Georgia1
Hi there. My doctor said proliferation was the key determinant, with the Ki67 score being roughly predictive. Sounds like you have a low Ki67 score at 10, which is what I had (along with an Oncotype DX score of 18), and I did not need to do chemo. I am on Tamoxifen.
Out of curiosity I just looked at the NIH website, which lists Ki67 plus genes STK 15, Survivin, CCNB1, and MYBL2 as components of the Oncotype DX assay.
Sep 1, 2018 04:53PM Georgia1 wrote:
Sara, the Ki67 score is an older measure, and doesn't factor in estrogen therapy like the Oncotype DX does. It also doesn't make a recurrence prediction, and it's generally considered unreliable. But it does - roughly - measure how quickly cancer cells are reproducing.
Hope that helps. Let me know if you had a different question.
Sep 1, 2018 05:09PM - edited Sep 1, 2018 05:12PM by Meow13
I definitely attribute my score of 34 to high er percentage 95% and no progesterone receptors. I had one score so I don't know if my ilc tumor or idc tumor was used. My mitotic scores were 1 for both tumors. No nodes, no skin involved only cancer found in 2, 1cm tumors. I chose AI drugs for 4 years I am 7 years out, NED.
Oncodx assumes tamoxifen will be given for 5 years, nothing on AI drugs.
Sep 1, 2018 07:30PM PatsyKB wrote:
You and I are so similar, Meow13 - I remember we discussed it a few months back. I'm 99%HR+ and 0%PR (zip, zero, nada). Would it be correct to assume that part of the reason why my score was 24 and yours 34 had to do with your two 1cm tumors (whereas I had one 5mm tumor)? Just a guess - I like to know the "whys" - but I'm not a doctor (nor do I play one on tv...)
I'm so glad that your AI drugs have been so effective and that you're 7 yrs NED. (Can't remember which AI drug/s you were on or for how long). My MO - made a point of telling me that because AI drugs are so much more effective for post-menopausal women, that it really made my odds better than indicated by my OncotypeDX test results.
Here's to continued health.
Sep 1, 2018 08:11PM Okkate75 wrote:
PR negativity and Ki67 of 20% drove my Oncotype up to 29, I think.
Sep 1, 2018 09:15PM - edited Sep 1, 2018 09:17PM by Meow13
I did anastrozole and exemestane and after 4 years I stopped. 5mm is nice amd small, I am sure hormone therapy is the right choice, especially AI. You are also grade 1 slower growing.
I wish mine were smaller maybe I would have gotten away with lumpectomy and not go through mx and reconstruction. Atleast the screening caught it early.
Sep 13, 2018 11:28AM Boston12 wrote:
I agreed to have the Oncotype test because I was told that it would give more information to my doctor. In fact, the information from this test is proprietary, so Oncotype owns it, so neither you nor your doctor have access to the information about what drives your score. I was very upset to learn that a company had medical information about me that I didn't have access to.
So the answer to one question here is that your doctor really can't tell you what drives your score. If I'd known this at the outset, I never would have agreed to the test as the pathology report gave sufficient information that indicated I needed chemo.
Sep 13, 2018 01:02PM Rondeezee wrote:
Many thanks to all of you for your responses. I really appreciate them. I am trying to gear myself to have an educated conversation with my Oncologist on my feelings regarding Chemotherapy for my particular cancer. I am preparing for her to tell me why she believes that I should have to have chemo (without Oncotype) vs. why I believe I shouldn’t have it. Based upon my pathology, there is no indication for chemo i.e no lymph nodes affected, no LVI, ki67 <10%, and a Grade 2 with a mitotic rate of 1. I am also HR+(ER 95% and PR 20%) and HER2-. My IDC was 2.3 cm and I had some DCIS as well. All, including clean margins, was removed with a BMX with DIEP four weeks ago. My history also includes DCIS w/radiation to the left breast 22 years ago. My recent cancer is a new cancer in the same breast. Genetics testing is negative
Sep 13, 2018 02:01PM - edited Sep 13, 2018 02:10PM by Moderators
Boston12, welcome to our community
What we have understood is that this is true of all types of genomic tests - they are indeed proprietary because the suite of genes is proprietary. You can see a sample test result here: https://www.oncotypeiq.com/en-US/breast-cancer/hea... The Recurrence Score is really the important result, but if you have issues, you could always consider contacting genomic health. http://www.genomichealth.com. Not sure this is helpful, but here is a bit from our site: Oncotype DX: Genomic Test,
Sep 13, 2018 02:46PM Meow13 wrote:
Hi Rondeezee, I would get the oncodx especially if insurance would pay the more info the better. Being both er and pr positive hormone therapy would be a good choice. I always worry about the delay because you do chemo first. I would want to know if it would be effective. The problem I also have with oncodx is you get a number. You don't really understand why, is it because chemo would be effective or is it just a cancer that has a higher chance of reoccurring it isn't always both. I too had mitotic scores of 1 on my tumors and I receive one oncodx score of 34. I chose to not do chemo even though my oncologist really wanted me to have it.
I did 4 years AI no chemo. I made the choice and I am happy. Definitely weigh all the information.
Sep 13, 2018 02:48PM letsgogolf wrote:
Rondeezee It sounds like you are a perfect candidate for the Oncotype test. Your stats are nearly identical to my sister's stats. Her tumor was grade 2, mitotic rate of 1, ER was 90%, PR was 15%, Ki67 was 15.9%, 1.9 cm, node negative, Her2-, no LVI. Her score was 17. I imagine yours would be within a few points either way (possibly lower due to your lower Ki67) and you could avoid chemo. She has done very well for nearly 4 years, post treatment.
Sep 13, 2018 02:52PM Rondeezee wrote:
Thank you Meow13. I will definitely push for the Oncotype so that I have all information available to me to make a decision on what I want to dofor post surgical treatment.
Sep 13, 2018 02:55PM Rondeezee wrote:
Thank you letsgogolf. Glad to hear that your sister is doing well. Thank you so much for sharing her stats..gives me something to hope for.
Sep 14, 2018 06:24PM Boston12 wrote:
Yes, I'm now aware that the information is proprietary but that wasn't explained to me at the time I agreed to the test. My only request is that patients who are at a point where they are trying to take in so much new information are told that they will not receive all the information that they have about your tumor biology. That being said, I'm aware that I live in the midst of a number of the top medical institutions in the country and that may mean something. My pathology report was excellent and I had a one hour meeting with the pathologist who showed me many slides of my tumor with a complete explanation of what each one meant. Since that time, I've read a ton about Oncotype, but I'm still uncomfortable that this company owns medical information about me that I don't have access to and that I wasn't informed about that until month later.
Nov 4, 2018 01:47AM PebblesV wrote:Rondeezee - did you get your oncotype test and score? I agree with others that it’s worthwhile. Here’s what I know about the test based on what my oncologist told me and my own research:
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