Oncotype Dx Test Anyone?

Dinaburg

I'm so confused I'm a stage I I a grade 2 sentinel lymph node positive. My onco test came back 16. My oncologist said I dont need chemo just tamoxifen? With lymph node positive not sure what decisionI should   make. I've heard ok stories about chemo and then stressful stories. My lump was misdiagnosed 2 times by different radiologists since November..., with a score of 16 it's hard to make a decision?

Warrior_Woman

Dinaburg - A score of 16 is within the low RS range.  On the second page of your report you'll see the difference between risk with and without chemo.  My MO focuses on where the lines split as the point where chemo is considered.  A second opinion may help with your decision.  

Chris13

Dinabug, I had scores of 8 and 15 (two ILC tumors). I opted for no chemo and with a mast there were no rads. When onco suggested chemo with the 8, I refused and she took the case to the tumor board (onco, BS, pathologist) and they recommended getting the 2nd tumor tested. When it came back 15 -- still low risk -- everyone agreed no chemo. I was more afraid of chemo brain than of distant metastasis, although we never know exactly what will happen. The thing with low oncotype scores is that chemo is not that effective, not so much that it isn't necessary. 

bicky6

Hi was so interested in the link you sent but can't open it up.  What could I being doing wrong?  My doctor told me there was an online test I could take while waiting for Oncotype dx test to come back.  I have spent hours looking and finally found your post. Thank you

MsPharoah

Hi bicky6, If you are referring to the link on page 1 that I posted many weeks back....I just clicked it from this forum and had no problem.  Not sure what problem you are having. 

MsP

cookiegal

Dinaburg...since 2009 oncotype has been used for node positive. I strongly suggest you get the full report from your doctor. Node pos doesn't really make chemo more effective. Admittedly the node positive study is based on a MUCH smaller group.

The good news is that if you look at the 1-3 node group, the prognosis on the lower end is really pretty close to the prognosis for no nodes.

If I recall, the bottom end of the margin of error for 1 to 3, crossed with the high end of the margin of error for node negative. So for one node the prognosis is pretty close to no nodes.

edwards750

Dinaburg - cookiegal is right. I had a micromet in my SN that my BS said had to be dissected and dissected again to find. I had the Oncotype test done and that micromet was still categorized as node-negative. It is very small...thus the micro. Also node involvement used to mean you couldn't have the test done but that is no longer the case...see the link from cookiegal. My score was 11 so there was nothing to talk about as far as chemo for me. You do need to look at the benefit of doing it vs not. With a lumpectomy, 33 RADS treatments and 5 years of Tamoxifen the chance of recurrence for me is 8%.

It goes without saying there are no guarantees but at least the Oncotype test gives us more information about our particular tumor and it affords our Oncologist another tool in determining treatment. Prior to taking the test my BS said the node involvement would get me chemo. It didn't. Bottom line is our Oncologists are the go to people for treatment. The one bit of sage advice I can offer is whatever you decide don't second guess yourself or look back at say if only. When in doubt get a second opinion. It is definitely worth it. You might want to read the link on this forum to ladies who did elect to do the chemo. Horror stories for some, not so much for others. Good luck with whatever you decide. Remember its your body and your life. Diane

Warrior_Woman

In my case, I am node negative yet had a score of 24 for the Oncotype.  In the past, I would not have had chemo.  I am smack in the middle of my chemotherapy now and I will say that I hate it.  However, I am glad to reduce my recurrence risk.  Chemo knocks my RS from 15% to 8% and if I do 10 years of Tamoxifen I will be closer to 5%.  Had I not had the Oncotype test done, I would be walking around with a 15% risk thinking that I was in the clear.  I don't like the 8% risk but it sure beats 15%.  BTW, the link for the pretest placed me as either low or between low and intermediate.  My actual score was dead center of the intermediate range.  In other words, it wasn't as accurate as I would have hoped.  

MsPharoah

All, the reason that the on line predictor isn't accurate is that most people under or over estimate their % of ER/PR.  The reason is that Genomics uses a different way to determine the % ER/PR receptors than the pathologist who look at biopsy or surgical tissue.  

When I did the test, I was told I was 100% ER positive on my surgical pathology, but Genomics turned out to be only 85%.  I was aware When I used the model, I allowed for their to be differences and I created a high/low model where on one I was 100% ER Positive and another I was 90%.     My higest score was 21 and I ended up a 24 but I was still mentally ready to be in the dreaded intermediate zone.

Sandra

QuinnCat

Ms Pharoh - how did you come up with that 85% vis a vis the Oncotype test?  My number was presented on a scale of  something to 12.0.  (Just from memory, it was a decimal number and I think 12 was the highest.).   The spreadsheet on page one uses an H-score which appears to be on a scale of 0 - 300.   I had to look that up and got this definition:

The H-score which takes into consideration the staining intensity in conjunction with the percentage of cells staining positively in breast carcinoma tissue.

I found the equation elsewhere when researching, but can't put my finger on it at the moment, but it was a composite of several things, while by deduction, it appears to me that the IHC score most of us get in our initial biopsies is possibly only the "percent of cells staining positively."

MsPharoah

Kam,  the Genomic scale is 12 and I was about 10 on that scale.  = 83%.  I was trying to relate it to the way the pathologist expressed ER/PR expression.  In my case, the pathology said I was 100% ER Postive and 0 % PR.  Knowing that the pathology "score" was suspect,  I discounted the ER score when I used the "analyzer"..  I used 90% and that was still not low enough.   Now that said because the spreadsheet uses a H score 0-300, I assumed 100% was 300 and everything below that was a fraction of 300.  So when I discounted my ER score to 90%, that made my H score 270.   Just a way to normalize everything.

 I was like everyone else waiting on the Oncotype score....hoping for a low recurrence score, but wanting to prepare emotionally if it was not low.  In my case it was a longer wait because the lab didn't send enough carcinoma to Genomics the first time, so they had to "start over"  GADS!!  Because I had a longer wait time, I had more time to surf the web and that's how I stumbled on the spreadsheet that tries to predict the Oncotype score.

MsP

QuinnCat

I don't think you can equate 8 on the scale of 12 on the Oncotype to your IHC score as 83% - the way the pathologist expressed that score.   (Anecdotally, I was 9.0 ER on the Oncotype and was 95% IHC.)  There was another thread on BCO, in the past, about people equating these two and there were no rules.  When I cited the H-score on the spreadsheet posted on page one of this thread, I noticed they weren't using just staining % (which I think IHC is, but not sure), but they also used intensity % to determine this H-score.  The Oncotype test isn't an H-score, but they too might be using some combination that also proxies staining (% showing ER receptivity) and intensity (of the ER receptivity).

Otherwise, both of us would have expected a 12-12.5 on our ER Oncotype score with 95% and 100% respectively.  Possibly we would stain high on number of cells showing receptivity, but our intensity was not as high?

QuinnCat

btw...interesting you are ER+ PR-.  Usually you see that with higher scores and higher grades.  Do any of your pathology report out your Ki67 %??  Has your MO told you if you are Luminal A or Luminal B subtype?

MsPharoah

Kam, I am sure you are right.  As I said, I had a lot of time on my hands and I knew it didn't make sense to calculate with 300.  Did my best to discount it.  As it turned out, the important part was that I was prepared for an intermediate score and knew that I would have to make a chemo decision.  I had more time to research and confer with my family about that which helped us all. 

 My Ki67 was 17% which some say is low and some say is high.  My onc is treating me as a LuminalB subtype, although I am probably borderline.  I was definitely Grade 1 Nottingham with a score of 4.  

MsP

QuinnCat

The cutoff for luminal B is Ki67 13%.  Compared to my 60% you are low    Hmmm....I learned something new - that a 3-5 is Grade 1 in Nottingham.  I guess I never thought of it, but 3 is the minimum total score, not zero!

Interesting, from your stats/Oncoscore and my Oncoscore (similar in many respects - I am almost PR-), it appears I got a lot of my extra points from my very high Ki67%.  What size was your tumor?  Do you know how your Nottingham got to "4?"   I assume, a 1, 1, and a 2?  Do you know what the "2" was in?  (Tubular Formation, Mitoses, Nuclear Pleomorphism).

MsPharoah

Kam, I will send you a PM

MsP

NancyHB

I love learning about others' test scores - and then am frustrated with the lack of info I have from mine.  My original path reports states my ER is ">50%" and PR is "~10%".  No Nottingham score, just notes that I am Grade 2.  In the end, I got more info from the Oncotype report, which completely blew my path report out of the water (I was a 6.6 on the ER scale (6.5 being cut-off for negative), and my PR changed from + to -.)   I've become kind of a BC nerd.

 My pathology
lab never did a Ki67, and (as I was warned by everyone here) Genomic
Health refuses to release my (*MY*) score from their testing. It's the
one piece of my puzzle that I really want, but two years later still
don't have. I wonder if it's too late to ask for it...?

QuinnCat

Nancy - if you have any luck with Genomics, let me know.  Why should this be proprietary knowledge?  I wonder if our MO's could ask for further info?  Just seems odds that the MO's might need to know which other genes are playing a part in our high scores given that there are so many journal articles addressing these genes.

NancyHB

I received a very curt, yet polite, email from Genomics that said they do not release proprietary information regarding test results.  MY results, but they own them, I guess.  And I've always been surprised that my MO does not seem to feel strongly that having that information would be helpful, although given my test results I suspect they think they already know all they need to know.  But you know me, Kam - I devour this kind of information like a picnic lunch.  I'm seriously considering contacting the pathologist to determine if there's any way to get more information.  That little piece of pesky Ki67 info drives me crazy!

QuinnCat

I know Nancy . I have some of your streak, so I get (and respect) it.  But I also have my Ki67, but that was just dumb luck.  That came from my biopsy path.  I then transferred my records to an NCI hospital.  It was after that I read my first path report and discovered the "ki67 60% poor prognosis."  Woah, did I fall off my chair. I then called the Nurse Coordinator at the NCI hospital and she told me they did not do Ki67.  She then consulted their pathologist and was told that test was unreliable.

For me, it is another piece of the puzzle, and one that Genomics would never give me, so I'm glad I have part of the explanation for my high Oncotype Score. I can't remember, did you ask your treatment center if they can do that test now?  I think it is just a matter of looking at slides.

coraleliz

Since my oncotype score was low, I assume my Ki67 is low. Pathology report doesn't include Ki67. My onco-score was 4. I assume I'm luminal A, but never asked. In some ways, I feel the oncotype just confirmed my "grade 1".I can't really ask my MO, he was against me having the test done. He usually doesn't use it, just goes by "Adjuvant" online program.

NancyHB

coraleliz, so glad you were able to get the Oncotype (and that you got a wonderfully low score!)  Sometimes, the test really does change the game.  I can't speak for others but I know my MO was shocked at my high score; based on all the info they had in front of them (size, grade, status, etc.) they just didn't see it coming.  And I was glad, in a way - sometimes we have to be "shocking" to get others to stand up and take notice.  If you meet one person with BC, then you've met one person with BC - we are all different and our cancers are all different.  Further testing helps hone in on the true nature of our personal beast - and for me, helped formulate a treatment plan that I believe will give me the maximum long-term benefits.

Kam, great suggestion - I think I'm going to go with that!  I'm sure they're tired of hearing me talk about that one stupid number, but it really matters to me.  Why?  I'm not sure...it doesn't change anything now...but I want to sit at the table with all the cool kids who have their Ki67 scores.  :-) 

Loral

It seems those of us with a PR-  DX have higher Oncotype scores......

KLJ

So glad that I stumbled upon this discussion this morning. Made me jump up and grab my pathology report because at my second appointment with my surgeon she mentioned that when she presented my case at he weekly meeting with several surgeons, oncologists, and radiologists it was mentioned that my Ki67 was high. She didn't seem to feel that it was and that I wouldn't need chemo. At that point I didn't even know what a Ki67 was. Now that I have looked at everything here is what my pathology report says. ER=100%, PR=88%, HER2Neu 1.4, Ki67=47%.

Then it gives reference ranges. Ki67 greater than 20% = unfavorable.

I am not scheduled for surgery until Mar. 17th so won't get an Oncotype score until then if that test is done. This still makes me feel that her comment about my cancer being a Grade I and non-aggressive can't be 100% true. Am I over analyzing? It's true too that if they give you too much time between diagnosis and treatment you have more time to research! I was diagnosed on Dec. 12th and had to move from FL to CA on Dec. 18th due to husbands work. My treatment is being even more delayed due to hospital scheduling and the timing schedule of my surgeon and my plastic surgeon.

farmerlucy

I am guilty of pouring over every little piece of my reports as well. My K-1 was 22, which was also deemed high (except my report says over 10 is high). My oncotypeDX came back at 3. My grade was 2. I have been tempted to get a second opinion on the grade, but I haven't done it. After I received my oncotype score I called my genetic MD who only does BC research. He said no doubt that oncotype trumps grade. He said grade is subjective to the pathologist. He also said that some believe oncotype trumps size, but most onco's aren't going there yet.

 I asked my onco at a visit last year about the Ki-67 being high, and she basically waived it off and said they don't put much faith it in.

My burning question is what was the actual size of the tumor, since it was not seen pre-PBM, and only found microscopically in the final path, yet it was 1.1cm. However it seems with this stuff the answer to one question creates another question.

Johns Hopkins will do a second opinion on the pathology. You can go to their website to check it out. I wish I had done that.

The also have a free service where you can ask a pathologist a questions. (Yep - I'm guilty of using it too!)

Have a wonderful weekend ladies!

Casper6

Hello really need help . I was diagnosed with invasicive carcinoma 11/13.Her negative  total mastectomy no nodes tumor 1.5. Oncotype 24  chem or no chemo  I will take hormonal therapy

Casper6

 I need helpI am Erpos pr pos negative nodes  oncotype 24. What should Ido.. Chem or not

Casper6

What is the. Ki 67 score

redlessi

I just declined chemo this week.  My onco score was 26 which is in the dreded grey area. My MO said she did not know if I would benefit from chemo or not. I begin radiation therapy next week with tamoxifen to follow. I decided I wanted to live my best life now and move forward. It was the best decision for me but Totally the toughest I've made in my life.

KLJ

Casper6, from what I read a Ki67 score is something that tells how fast your cells are dividing??? I really don't know and my surgeon like Farmer Lucy said, basically waived it off and didn't seem to think much of it. My husband is banning me from looking stuff of on the internet for the day! I can't help it, it's my personality type to delve into every nook and cranny of whatever it is I need to research. But, since he is outside building me a chicken coop I am going to give it a rest for now! I'll be back researching more tonight!