Another Oncotype question

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Thanks PLG! That was the most understandable explanation of the score differences I've seen!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited June 2012
    PLJ - you are my hero.Kiss  How in the world did you get through to Geonomic techs??
  • PLJ
    PLJ Member Posts: 373
    edited June 2012

    Ladies, y'all are makin' me blush!

    I think I was just lucky getting to speak with a tech. I had so many technical questions that were beyond general inquiries that they had him call me. We had several subsequent conversations because I knew who to ask for and he even emailed me studies and other important information. It was very helpful and I am happy that it has helped others, too.

  • Lee7
    Lee7 Member Posts: 657
    edited March 2013

    PLJ,

    I definately wanted to know as much as I could, still do.  I had to go back and look at my Onco scores again.  My Onco ER was 10.8, original path report just said ER>90%+, My PR came up at 6.8, and my path said 30-60%+.  Ki-67 was approx. 20%, borderline.  My overall Onco ended up 20.  To me this sounded about the same results between Oncotpe and the orignial path report ...just using different scales.  So I'm guessing my miotic rate is what bumped up my Oncoscore?   How much weight do they give to it ?  Can't the rate also apply to healthy cells they see dividing?   I wish Genomics had more specific info for us.

  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    I called the lab today. Long story short: as far as Genome is concerned, I am triple negative. they said that the "concordance" between IHC staining and FISH is about 95%. They didn't know how my slide could have shown 30% ER positive when their test shows >5%, said I should talk to my Onc. Also said that the score of 38 might not be valid since it is inly for ER positive.

    Where does that leave me? In terms of chemo, if I were 38 Onc really I would have had it.l if I am triple negative I certainly would have had it.. So being on my chemo oath is OK either way. However, in terms of hormonal treatment after, it raises many questions. They suggested asking my doc if we can recheck OUR results.. So I guess I need to make an appt with him, and not the 15 minutes of fame I get just before chemo..

    Funny, when he showed he the discrepancy he said he'd never seen that before.. Let's hope he did some research just like I did.

  • dobie
    dobie Member Posts: 424
    edited June 2012

    I created a separate thread with this question before I found this thread, but this looks like the right place for this. I talked to my MO last week and asked him about getting a Oncotype Dx. I did not feel strongly about getting it because the 2 ILC tumors found in my breast were 0.2 cm each so I really don't think that qualifies for chemo no matter what the Oncotype # is. And i just had UmX on previously radiated breast, so won't be getting rads. Agreed to Aromatase inhibitor. But I told him I could not ignore the option of a PMX to manage risk in my left breast especially since this is not easily seen on mamo or MRI. My thinking is that a low Oncotype will be reassuring and a higher one will steer me toward surgery. I know this is not really what this test is designed for. But MO was sympathetic to my dilemma and ordered the test and insurance covers 100% so husband says, why not? Im kinda surprised he went with it , i wasnt realy pushing for it, just wanted to address the issue. Now i am wondering what i am going to do with this information when i get it especially if its high. Anyone have ideas, knowledge, opinion, data on this ?


    I am ER 100% + PR neg, her2 neg. don't see a ki67 on my report but mitotic score is 1 (low). So I really don't expect a high score but from what I'm reading here, you never know for sure.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Hi dobie

    You said : "I am ER 100% + PR neg, hers "

    Pls tell me, if you dont mind- where is that info from/ the oncoptype testing?  My RO said they did not ' quantify' my ER PR +  and this is MassGeneral- I wish I had more info as well.

    I am sure someone else will be able to help you with your question.  Thx for any help with mine.

    Good Luck.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2012

    Purple32- that doesn't even make sense.

    http://www.oncotypedx.com/

    Try here.

  • dobie
    dobie Member Posts: 424
    edited June 2012

    Sorry for the confusion. That information is all from my pathology report post surgery. I do not have my Oncotype testing results back yet. Don't expect it for a week or so..

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Help withCancermath?

    I have no clue as to where to put this topic, so here goes !

    Can anybody help me out with the caqncermath ? I am 54 yrs old and my stats are in my signature. I skipped rads (clean margins, clear nodes) and have not yet begun the tamoxifen.

    When I enter all this in, it basically says I will die one yr sooner (w/out any add'l tx!)  Though I'd LOVE to believe that ( who among us wouldnt ?) I know something is awry.

    Can somebody help ?

    Please PM me.


    Thanks!

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Yes, Diana

    I have seen this website and even called and spoke with them!

    They too told me it made no sense as MGH has ordered lots of testing. Then I asked if it was ever stage 1 ,grade 1. The gentlman asked me to hold on.

    He came back and said he never noticed before , but no - not once!

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2012

    Purple32- I did the cancer math with your info.

    without Tamox- cancer death rate 4.4% over 15 yrs and shortens life expectancy by 1 yr

    with tamox- cancer death rate 3% and doesn't change the life expectancy.

    How do you make a decision based on that.? I am not sure about homonals either. I got rid of the boobs, the ovaries are next and my recurrance score was an 8. Wish we all had a crystal ball.

  • dobie
    dobie Member Posts: 424
    edited June 2012

    Purple 32- when I was dx 5 years ago the programs indicated that although taking medication would reduce my risk of reocurrance. It did not change my survival. That is because, when you have a small relatively nonaggresive tumor which has not gone to lymph nodes your survival rate is very good no matter what you do. And if it does reoccur it will probably be small and non aggressive again. Probably. Like Dianarose said, no one has a crystal ball. I chose not to take medication and just had a reocurrance. Again early detection is my saving grace and this cancer still will not effect my survival rate much, but it cost me my breast this time. I decided to take a aromatase inhibitor this time. Cancer is just no fun, and I don't want to press my luck any further. That's me. Everyone has to decide for themselves taking into consideration their tolerance for risk of disease vs risks associated with medications. No easy choices.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Thx Dianarose.


    How ? Well if I knew the cancermath was accurate and any better than a crystal ball  (i'm doubtful) I wouldnt touch the tamoxidfen!
    In any case, I do thank you for taking the time to do it for me - I really appreciate the help.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Thanks dobie.

    I'm sorry for what this has cost you, and I can say without reservation that I dont want to pay that price either.  However, you said :
    "I decided to take a aromatase inhibitor this time."


    I just dont have that luxury. If I had a  decent baseline, I would take that in a minute- much sooner than the old tamox.  With my osteopenia and history of 3 broken bones in my 40s , I just cannot take the chance of 'a broken hip , but lucky me - cancer free '! 

    I've just ordered a request for my ki-67, and I am hoping that will provide me with some answers.  I am not just sorry for lil ole me....this crap sucks, and I'm sorry for *all of us* . Any one us us who still has 2 breasts need not feel guilty as we  may be up for losing one in the future.  Anyone alive right now, may  be taken by this as my good friend who was NED for 8 yrs just was.  Cancer stinks! 

    I wish you all the very best.

  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    What does NED stand for? I see it around these boards and just don't know what it means.

    I still get confused about the difference between "survival" and "recurrence" rates. The reason my sister just had a preventative BMX (after a lump/rads/chemo treatment on a 2.5 grade 3 some nodes tumor 7 years agoat age 44)was because of finding out we were BRCA1 pos. She wanted to do everything she could to prevent a new primary from showing up. When I was found to be positive too, last fall, I had my ovaries out and began "increased surveillance." On my first MRI, they found a 8mm tumor in one breast. Surveillance didn't last long,eh? I had the BMX in Feb.  My oncotype was 38, my K167 was 43, my grade was 3, nodes clear. So my onc says we got a bad player very early.  Let us hope that chemo, hormones, and major surgeries do give me some protection, at least for a while. My sis took tamoxifen and aromatase and didn't have SEs from either. Hope that is my story... but I have to finish chemo before I cross that bridge. My onc is convinced the benefits of the hormonal treatments is compelling.

  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    Lisa NED stands for No Evidence Detected.  I was reading & saw you asked this ? so I popped in to answer.  This is what I know it to mean.  I hope this helps!  So much to think about & figure out with BC....it's never seems to be a cut & dry answer to anything!  I'm between DCIS & IDC....such a gray area!

  • Layla2525
    Layla2525 Member Posts: 827
    edited June 2012

    Interesting reading, I was not offered the Oncotype test and was told since the nodes were negative did not need the test or chemo.

    MO gave me Arimi but I was so allergic to it that they cancelled it and all ER antagonists but I was 100% ER and PR positive! Has anyone not taken a hormone therapy and been ok?

    Do you not need the Oncotype if the dr does not think you need chemo? Unsure how it all works.

    The Journals that the drs read just finished research on a 1 million women study that proved hormone replacement therapy for menopause with synthetic estrogen and progesterone can cause breast cancer. tried to copy the first paragraph onto here but couldnt get it to work,I dunno how to work my own computer..let me go back to my cave.

    Did anyone take hormones for menopause? I took bioid hormones for 5 yrs.

  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    Layla, I'm 45 & have been on the pill off & on over the years.  I have 4 children, 7 pregnancies total.  I took natural progesterone for my last 2 viable pregnancies.  I also took the pill for excessive bleeding along with Depo Provero shot & agestin also before my hyster, just the Uterus.  That was 6 years ago.  My RO didn't say much about the progesteron type meds, but noted the use of the pill off & on for years.  Who knows what all that did.....makes me wonder.  No hormones needed for my Hyster.  But I do have a friend in her early 70's that had a complete Hyster in her late 20's early 30's.  She was on replacement hormones for many years.  She was DX 4 years ago with BC.  Not sure what kind but she needed just RADS as far as I know. 

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Do you not need the Oncotype if the dr does not think you need chemo? Unsure how it all works.

    No, you dont actually need it, but I would like to have had my info. At Massgeneral, they do not order if if you are stage 1 , grade 1-period.

    I did , however, just request a ki-67 be done ( at Path. now)

    I am 54 and went thru meno at 41. Did not take hormones ( sure wish I would have popped the Evista!)  In any case, I took the pill in my 20s and 30s off and on and for very heavy bleeding, I was periodically oin different hormones.  I have tamoxifen awaiting me at the drug store. I dunno'.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Kam170

    I got thru too....just go to the website, get the number and call,.  It was easy!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    According to NCCN guidelines, physicians and their patients may consider the Oncotype DX test for Stage 1 and Stage 2 ER positive HER 2 negative tumors with up to several nodes positive. Grade of the tumor does NOT matter. In fact, some Grade 1 tumors have intermediate or high Oncotype DX scores. The test was designed because they knew many ER + sisters were being over treated with chemo. The Oncotype DX test was able to determine who would benefit most from chemo despite their tumor grade. Likewise, there are some sisters with Grade 3 tumors who have low Oncotype scores. If Mass General is NOT doing Oncotype DX tests on grade 1 tumors, I would appreciate if this info can be confirmed because I find that hard to believe.



    NED is "No Evidence of DISEASE."

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    "tumors with up to several nodes positive..."


    It can be confirmed. I went to the Genomics site and called them . They said I was wrong ...that MGH routinely orders oncotype testing.  Then, I specifically asked if he would look at Stage 1 grade 1. He had me on hold for awhile and then returned. He was surprised at something he never noticed ..there were none.  I suppose you could call them yourself if you wanted it ' further confirmed'.

    I did have clear margins/ clean nodes.

  • julz4
    julz4 Member Posts: 2,490
    edited June 2012

    Thanks Vorac.....!!!!! I thought I might be missing something!

  • mariwyl
    mariwyl Member Posts: 53
    edited June 2012

    I'm relatively new to all of this, dx'd in March, BMX May 9.  I have my first MO appt on 6/26, and I am going to request/insist on an Oncotype before I make my decision for ANYTHING.  Being a long term survivor of Hodgkins Lympoma (37 years), I am not in any hurry if at all, of adding more toxins to my body at 61.  I am post-menopausal, Ki-67=15%, ER+ 300, PR+ 290, the rest is in my siggy.  From what I've read, and data isn't always 100% spot on, the Ki-67 correlates often with Oncotype Dx RS.  If I have a low RS, I'm not even sure I'll agree to AIs if it is recommended. Just my thoughts....

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Mari... You can contact your surgeon and ask that they send the tumor sample to the Oncotype DX folks so that by the time you visit your MO, you will already have the results. That's what my surgeon did.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    Purple.. Whoever told you that, I doubt is believable because the whole philosophy behind the Oncotype DX test is to determine which tumors might have a high chance of recurrence IRRESPECTIVE of grade. I highly doubt Mass General would be doing that.

  • Cindyl
    Cindyl Member Posts: 1,194
    edited June 2012

    Just be aware that the Oncotype DX is a very expensive test ($4000-$5000) and some insurance companies don't pay.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited June 2012

    In fact, Purple, I am going to go out on a limb and say more Stage 1 Grades 1 and 2 sisters get more Oncotype DX testing because they would be the ones more likely to defer chemo if they received low scores. Whereas those sisters with grade 3 tumors would more likely choose chemo regardless of an Oncotype score.

  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    voracious

    Both MGH and the  person at Genomics told me.  (Spoke to MGH again just yesterday!)
      Having said that , perhaps  it was *also* because I was clean and clear. Does this make more sense ???
    In both cases, when  asked, I probably mentioned those 2 things as well in my " rant"  :
    stage 1

    Grade 1

    1 cm or less

    clean margins

    clear nodes

    yadyadyadada

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