Oncotest Scores

wonderwoman123

Hi everyone, i just got my oncotype score of 14.  I was surprised since i am Grade III.  

Any Grade III's out there that did not do chemo?

Any Oncotest scores of 14 or less and did do chemo with no node involvement, ERPR+, HER-.

 Looking for info before i head to my MO tomorrow for the plan.  

Thanks all,

Linda 

momof3boys

Well, my score was 16, no node involvement, no vascular invasion. I did chemo (TC x 4).....

What did your MO advise?

coraleliz

Maybe get a 2nd pathology opinion. I haven't done this but it involves having your tumors slides sent elsewhere. You can have them sent to a large cancer center(NCI). Maybe they'll tell you your tunor grade is a 2 since subjectivity is involved. Then there are others who think the oncotype test trumps grade & it is not subjective. I honestly don't know what I'd do with your numbers. Both my grade & oncoscores were low, the decision still wasn't easy.

wonderwoman123

Thank you for replying momof3boys and coraleliz

My MO and another oncologist in his office, and they basically said there is no clear answer, and that it is up to me.  They said the onco score of 14 is saying no chemo, the grade III is saying chemo.  So 5 years ago i would have gotten chemo automatically.  But one of the reasons they do the onco test is so they have more information to make the decision....and my RS recurrence rate is 9% and taking chemo would only buy me 1 or 2 % tops, taking it to 7%.

 With either decision they said there is no guarantee, so i can do chemo and end up with mets in the bone in 2 years...or i can not do chemo and that could happen also.  it is really choosing based on the information, and unfortunately my information is conflicting.   

i really do not know what to do.  I have been through this 2x with my son who had leukemia as a child and i do really know what will be will be, and often does not match the best intentions we are trying to follow.  some people with the worst scenario live and some with the best do not.

Thank you for replying, i appreciate the added info.

Linda 

cookiegal

wonderwoman...do you know your ki67?

There was a study suggesting a few years back that the low oncotype woman who did get mets had highter ki67, and that was the exception to oncotype.

Not sure if that is any help at all. 

wonderwoman123

cookiegal.... ki67 was 50%

Thank you for that tip, i shall go research and see if i can find that study!

I think the main reason i am hesitating about the chemo is i keep reading, and my MO said (prior to my score coming back) that low scores are people that chemo is not effective on.  So i really don't want to put my body through that if it is not of any benefit.  

i also wonder if my insurance would cover it, if my oncotype score says not to do it.  I am new to America (from canada) where all your medical is covered, so i am just learning the medical system here, and so i tend to worry cause i have heard some horror stories about people not having coverage for this or that.  

Thanks again Cookiegal!

Linda 

cookiegal

ok...hope I am not moving into the giving medical advice...

docs are right, chemo is not effective on low oncotype.....

typically because it's a more "sluggish" cancer

I think 50% is kind of high for a low oncotype cancer, I think it is the percentage of actual cancer cells in the tumor. Most low or medium oncotype people have lower KI67. I was a 22 and my Ki was about 10%. Even though I was node positive that was one factor in skipping chemo.

(Which was a HARD decision.)

I really really think you want a second and maybe third opinion. Oncotype is a very good tool, but it is not the only factor.

I am guessing your ER is very high and that your genetic profile was good and those factors tipped the score from the higher KI67.

I am no sort of expert though, just a google junkie, so please take what I say with a big grain of salt. 

wonderwoman123

Thanks Cookiegal...totally know you are not trying to give medical advice...it is great to have a sounding board!!

cookiegal

If you look at the pages that come with the oncotype report it gives you some idea where your score is coming from.

You see where you fall on the her2 range, you see your ER, I can't remember all. My onc and I were surprised I came back at 22, because the obvious things like KI67 and er indicated a more "laid-back" cancer.

Where I failed was in the genes. Not a big surprise because there is a decent amount of cancer in my family. 

Reading between the lines, I would look for a more analytical onc. My gut with the KI67 and the grade is that chemo is a reasonable choice for you, and this is coming from someone who really pushed the envelope on not doing chemo. But again, I am so not an oncologist.

CMF seems to be a popular choice when people are trying to split the difference. Some call it "chemo-light". Hair loss is typically 20-50%.

sandilee

What have you decided, wonderwoman?    I know where your oncs are coming from.  My oncotype score was 18 four years ago, and with a grade 3, very small tumor with no nodes at age 56, my very able oncologist did not recommend chemo because he felt it would not be of benefit.  I didn't have it,  but three and a half years later, I have a recurrance.

  Would I have had this happen if I had the chemo?  I don't know, of course. Maybe it wouldn't have mattered. But if I could turn back the clock, I would do it.  I still may have had the recurrance- after all , someone has to be in the 12%, or whatever they said I was at the time. I'm sure that my onc believes it probably would have come back, as 30% of early stage cancers do reccur.  But you have a chance right now to get after some of the stray cells in a big way, and then follow up with the hormonals.   

   

momof3boys

Wonder woman- how old are you? Any other medical issues? My MO's group uses 11 as the cutoff for young (I'm 43, they considered me young) otherwise healthy BC patients...

wonderwoman123

Sandilee - thanks for your post. i have been on quite a roller coaster.  i get some info and lean one way and then get other info and lean another way.  I have 2 other oncs looking over my info to give 2nd and 3rd opinions.  I don't want the chemo if it is useless.  And i think the oncotest is stating in my case it showed 0% helpfull... so that makes no sense to do it if it is of no use.  And i wonder if my insurance will cover chemo if my oncotest says it is of zero use!!  

Momof3boys - I am 56... not sure if that changes the number to do chemo or not.  

I am researching about the oncotest itself.  and i am asking my onc if we can get the data behind the score of 14 - so i can see why i got that score.  maybe that will show me why the chemo will not work on me.  i do wonder if it will show that the sample from my tumor was actually not the most active part, and hence the discrepancy between Grade III and low score.

I will keep you posted!  Any more info you know, or people who  have not done chemo on Grade III - pass t hem on!

Thanks

L 

wonderwoman123

Cookielegal.  Thanks for your thoughts.  I too have a ton of cancer in my family, including my son having leukemia twice.  So genetically i thought i would fail for sure.  Again the onco test does not seem to really match either me, or my tumour.  I am discussing with the onc to redo or send the data behind the score, and i am waiting for 2 other opinions.  I am leaning in the direction of chemo but will await the rest of the opinions. 

i assume you had chemo then?  Did you have the CMF?  My doc had mentioned to me he would likely do the TC x 4 if i chose to go the chemo route.

L 

artsee

Linda, let me put in my two cents worth. If it were me with a stage two and grade three I think I would choose the chemo route just for my own peace of mind. I would not want to wonder every day if I did everything I could to keep this beast from coming back. You are kind of between a rock and a hard place.

I had stage one and grade three. My onco score was 35, and my Dr. had me do the TCX4. Then did 32 rads.I did everything I could but if my score would have been in the teens, I would have done the chemo just for my peace. I would go over the deep end....wondering. I can't imagine insurance not covering because of an onco score. Hope this helps and keep us up on what you decide. If I just repeated other posts I apologize. Did not read them yet.

cookiegal

@wonder

Totally normal to go back and forth. Seriously.

No I did not do the chemo. It would have been dose dense CMF.

One of the other women on my lumpectomy and reduction thread also had it.

And I totally agree with you about not doing it if there is not a benefit.

The only reason why I think it may be an reasonable option for you is the ki67, and the fact that I read about the study looking at whether that was maybe a factor in the low oncotype women who got mets.I remember paying 27 dollars to read that study on line. I was obsessed with trying to find some answers.

But if the oncs are not concerned about that, then I say carry on.

Sorry you face such a tought decision. The oncotype report is three pages long, I just went to my onc's office and asked for it.

Actually seeing the charts helped, the breakdowns were on little bars I think.

momx3

Wonderwoman,

My two cents<<<< My OncType was16. I was node positive and I'm on Tamox. My onco told my husband and I that if it were his wife, he would skip the chemo and move on to radiation and that's what  we did.

I hope that whatever decision you make is the best one for you!!!!

Dianarose

Hi, I am not grade III but stage III grade 2 with positive nodes. The surgeon said chemo was an automatic, but I insisted on the Oncotype anyhow. I called Genomic Health and they said they sent the results to my MO on the 18th and they would not give me the score. I just didn't want to do chemo if it wasn't going to be a big benifit. I had IDC, ILC, DCIS, and LCIS. No tumor bigger than 1.5 but a ton of little lobular ones. I will be curious what my score is. I had a bmx 9 days ago and I know I need radiation, but wanted more info before doing. Everyone thinks I'm crazy. They think I should just jump into chemo without knowing.

wonderwoman123

momx3 - wow, even with node involvement.  holy.  those oncotype scores sure seem to mean something really important.  and i totally understand, chemo has it's drawbacks, there are some serious risks, and it is really hard to chose it, when the oncotype tells you not to.  thanks for replying.

dianarose - i hope you hear soon, i know the waiting is the very hardest thing.  It is good to wait, get all the info and make an informed decision.  Good for you.

 artsee - how was the TC X 4?

cooklegal - yes the ki67 worries me also.  oh what i would do for a crystal ball!

Have a good sleep everyone, yay it is the weekend,

Linda 

doxie

wonderwoman - Did you have a needle punch biopsy?  If so it might be helpful for you to check if there is a substantial difference in the Ki 67 in your biopsy tissue vs your surgery tissue.  Ki 67 indicates cell proliferation.  Unless the pathology lab is very careful, a higher Ki 67 in the surgery tissue indicates cell proliferation indicating healing of normal cells from the biopsy. If I remember correctly, the Oncotype test samples tissue 3 x for acuracy and I think there is an effort to distinguish between cell proliferation reparing healthy tissue and that from cancer cells.  Also thrown into this mix is that cancer tumors are heterogomous.  A sample taken from one area in the tumor may be quite different from another.  

I wish I knew where I read this info so I could attach a link, but it has been a few months.  Careful googling might bring it up.  

 Good luck with you decision. 

doxie

I wasn't as clear as I could have been, so here's another try.  If the Ki 67 is higher in the tissue sample from surgery than the needle punch biopsy, then there may be cell proliferation evident from normal cells in response to the earlier tissue damange in addtition to cell proliferation from the cancer cells.  If the two aren't teased out from each other, then the Ki 67 may be counting the two together, thus a high % not entirely accurate and not reflected in the Oncotype recurrence score.

cookiegal

doxie...wow! Great information!

@wonderwoman One of the most fascinating things was that on node positive oncotype graph, even a lot of nodes still had the same limited chemo benefit...now that group was very small....the whole study was 347.

But that brings a challege....what it the best treatment for a cancer that is low oncotype but spreading. I also thought I read that the cancer in the actual nodes could be different from the main tumor.

I wonder if Parp or anything else (metformin?) may be an option.

It is really curious about the high ki/ low OS because I thought chemo works better with a higher proliferation rate. That biopsy answer is fascinating.

Cancer sucks but it's not boring!  I don't know who the big research dogs are on the left coast, but I hope you get to talk to some smarty pants oncs who give you good answers.

cookiegal

http://ijs.sagepub.com/content/17/4/303.abstract

artsee

I'm sure TCX4 is a cakewalk compared to some other combinations out there. Went to work during the chemo. Had it every third Friday....Mon. was my day off and Tues, I was good to go at work.

wonderwoman123

YOU LADIES ROCK!!!!!

THANK YOU so much for all your replies.  I really really appreciate it.  

cooklegal - great great article!  

artsee - thank you for that, makes me feel much better.

doxie - i had a core biopsy and my score for ki67 was 50% for that test.  i actually don't think my ki67 was listed on my surgery tissue...but i am going back to look now!!

Thank you gals!  

Linda 

wonderwoman123

Just an update from me on the issue of Grade III vs. low Oncotype score.

 Saw a 2nd oncologist today who totally saw all of my concerns in regards to the low score vs the high ki67; PNI; Grade III; suspicions for lymphovascular invasion etc. 

She said unfortunately path reports are subjective vs. oncotype scores which are typically not.

She also said sometimes an oncotest can be done on the wrong slide... since all slides are not equal...

She suggested i get the slides back from Cedars and she will get them to a breast pathologist to really do a good checkover, and see what we get.  

She basically said there is the next layer up or down (depending on how you look at it) where the information is divided in to categories.  And basically Lumina A people don't benefit from chemo and typically also get a low oncotype score.  And Lumina B people do benefit from chemo and don't usually get a low oncotype score.  According to my Cedars path report i am a Lumina B and they would get chemo...

So we wait.  hopefully before end of week, we know, what i am!

Thanks again for everyone's 2 cents, it's gonna add up to a buck soon!  Anyone who knows anything about Lumina A & B, feel free to add on.

Cheers,

Linda 

Dianarose

wonderwoman- what is Lumina A&B? I have never heard of this.

Dianarose

http://www.nature.com/nrclinonc/journal/v3/n11/full/ncponc0636.html

Wonderwoman- I just found this.I hope it helps.

cookiegal

I have heard of Luminal B. That is a good thing to look at. I am glad you feel you are in good hands!

wonderwoman123

 Dianarose - Thank you  that is a great article.  Really great!

 cooklegal - Yes, i am feeling quite confident that i am being heard and i am doing the research i need to have the understanding to be confident in whichever way i decide in the end. 

what a journey, holly molly.

Hugs to all, 

wonderwoman123

Hi everyone

I heard from Dr. Chung today, she was the 2nd opinion (well actually 3rd) and she recommended getting a breast pathologist to take a look at the slides since my oncotest was only 14 and my tumor was Grade III.   But she stressed that pathology is somewhat subjective and she felt it should be checked.  

this pathologist felt the tumor was a definate Grade II.  And the ki-67 fell in the intermediate range not the high range.  So that does match my oncotest score and seems to make more sense.  I have not seen the full report, hope to get that by Monday.   Again she stressed that chemo in my particular case would have minimal effect, with the high er+pr+ the hormone therapy is the key, and that chemo for me would at best lower my risk from the current 9% chance of recurrance by 1-3% down to 6-8%.  

She suggested i think about the small benefits of chemo (in my case)  vs. the risks.  She said it really still comes down to me, and how i feel about this.  She asked if i would be destroyed if i did not do chemo and it did recur.... In the end i felt she was leaning more to no chemo,but she was clear that it is a personal decision in these on the fence cases.

So, i will think about all this over the weekend.  

thanks again everyone, for listening 

 

Dianarose

wonderwoman123- I got my score yesterday and everyone was shocked. Mine was a 6, now they aren't sure what to do. stage IIIa with positive nodes. My recurrence score was an 8.

http://www.ecog.org/general/gendocs/tailorx_oncodxfact.pdf

I found this article yesterday. Maybe it will help you decide.