Oncotype DX score # those with Recurrence or Metastasis

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somanywomen
somanywomen Member Posts: 872
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I just wonder if the Oncotype DX score number of those with recurrence or matasisis follows the clinical trial studies of the low/mid/high range..Since this is a newer test that if in the mid range you really need to base a low % of benefit of chemo vs the se's of chemo.....I don't believe any test/proceedure/meds will give us a guarantee but thought it might be interesting for those of us on this site trying to learn and understand all we can....Thank you for any input....

 I don't know why this Topic posted 2 times, can't seem to delete the extra one...

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  • kira1234
    kira1234 Member Posts: 3,091
    edited September 2010

    I would find this interesting as well. I am trying to decide do I want to continue my chemo or just stop. My SE's have been really bad. I had radiation recal which has caused my breast to become infected as well as second degree burns on it. I spent 3 days in isolation on an IV to treat the infection, as well as meds for the burns. I am home now but still taking meds for the infection and burns. My BS feels the SE have been bad enough I should at least consider stopping the chemo. As far as I can find out the chemo only reduces my risk by 3%. Now I have to decide what to do.

    Karen

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010

    Bumping........I think this would be a good survey, is anyone interested?

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  • auriga
    auriga Member Posts: 315
    edited September 2010

    I think this would be very interesting to know. So one vote from me.

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010

    Wanted to Bump again, don't you think this would be a good survey since they are using this test so often now... Would love to see how it relates to us real women on this site?

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited September 2010

    I have asked the same question numerous times.  After researching the entire net, I'm happy to say that I can't find anyone who had a low Oncotypedx who had recurrence or metastasis.  I hope this is true:)

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    Thanks Nancy...I live in a small area with smaller hospitals etc., had I not read about the Oncoscore test on this site last year when my shock of DX was given to me, I don't think my docs would have offered it...When I did ask my Onco for the test, he said I was the first to ask for it (he is suppose to be one of best in my area) yet, he seemed surprised that I wanted it....You would think that it would be under standard of care...Yet, they do not offer it unless you ask for it so it makes me wonder how accurate some of it's data is and I thought that if we could get some women on here to post how long  they have been cancer free or recurrence we could see if our results are close to the ones on the Oncotype DX site......
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  • kellyj
    kellyj Member Posts: 75
    edited September 2010

    This is an interesting post.  I have wondered the same thing myself.  I had an oncotype score of 15.  I had a recurrence 2 yrs after my diagnosis.

    Kelly 

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  • kellyj
    kellyj Member Posts: 75
    edited September 2010

    This is an interesting post.  I have wondered the same thing myself.  I had an oncotype score of 15.  I had a recurrence 2 yrs after my diagnosis.

    Kelly 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    The Oncotype DX is not supposed to predict recurrence, it is supposed to predict if your specific tumor is susceptible to chemo, or if you are better off using a strictly hormonal approach to treatment. It focuses on the characteristics of the tumor, not your overall risk factors.   

    Remember, a local recurrence could be a totally new cancer because unless you make some major changes in diet and lifestyle, you still have all of the risk factors that lead to the original cancer forming.  A distant recurrence is a totally different situation.  That is what treatment with chemo hopes to prevent.   

    A more telling survey would be how many women do neo-adjuvant or adjuvant chemo for "early stage" disease, and wind up with a stage IV diagnosis in spite of it.  We know that chemo doesn't cure stage IV disease.  Is there any evidence that it can cure stage IV disease that is not yet detectable on scans or tests?  If not, why not spare women from chemo? 

    Would women diagnosed at early stages sign up for chemo if they knew that the best they could hope for is that if their disease has already spread, doing chemo at this point might delay the start of symptoms?

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010

     I copied below paragraph directly from the Oncotypedx.com website, says it is used to predict..Looks like it is used for prediction of both recurrence and chemo benefit per tumor analysis (score)...There is a lot of info on that site..I was just wondering how it related to us...

    The Oncotype DX assay is a validated genomic test that predicts the likelihood of breast cancer recurrence, the likelihood of patient survival within 10 years of diagnosis and the likelihood of chemotherapy benefit in early-stage, node-negative, ER-positive breast cancer. The Oncotype DX assay uses a reverse-transcriptase (RT) polymerase chain reaction (PCR) process to quantify the expression of specific mRNA for 16 cancer genes and 5 reference genes in paraffin samples obtained from a breast cancer biopsy, combining the expression results into a single score called the Recurrence Score® result.

    Kelly, thanks for posting, I think most of us that are familiar with the onco scores are surprised that you with your lower number had a recurrence in only 2 years...Did you do chemo?

    I
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  • kellyj
    kellyj Member Posts: 75
    edited September 2010

    I did not do chemo the first time around.  I remember the onc stating the the test would tell how aggressive the tumor was by the score it revealed.  So, a high score would require chemo, because of its aggressiveness.  I could be wrong.   I had double mastectomies and tamoxifen.   

    The major changes in lifestyle is interesting.  I have always been a healthnut.  Exercise and eat right. Not a lot to change.  I ask the oncs that question a lot.  "What can I change?"  They have no answers.  I did get my ovaries out.  Maybe that will help. 

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    Kelly,

    I have very similar stats as you, only ILC.  No chemo or rads, just BMX with reconst. and no Tamox.  Oncotype of 5.  How did you recurrence show up?  If you didn't have reconstruction, was it a lump?   I'm obsessed lately with recurrences... two years after DX.

    I've been advised by OB to not remove ovaries, as it causes a lot of other issues...heart, bones, etc.  I'd do it in a minute if it was advise, especially since I'm not on Tamox.  (another story).

    Beth 

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  • kellyj
    kellyj Member Posts: 75
    edited September 2010

    Hey Beth,

    My recurrence was a lump on top of my implant.  It appeared in the 11 oclock position when the original was in the 9 oclock.   I can pinpoint the time when I felt that tamoxifen stopped working for me.  My onc has it in her notes.  I asked her if I could have gotten a bad batch because my side effects went away. The next year there was a lump.  I was very good at taking the Tamoxifen, didn't skip days.   When it came back, we threw everything at it.  Chemo, rads, and ovaries out.  I have also had an unrelated brain tumor that may be related to hormones.  

    Kelly 

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    Kelly,

    Tell me about your biopsy for the 2nd time lump.  I have a lump, too, exactly in the same spot as original.  Long story, but ultrasound is "inconclusive" and it doesn't show up on the MRI.  BS is hesitant to biopsy because of implant. She couldn't get it with a needle.  How difficult was your biopsy, and did you do it in the office...was PS involved?   I'm crazy with dealing with this BS and currently looking for a 2nd op.  If this does turn out to be a recurrence, I'm right there with you as far as throwing everything at it.  Thanks.

    Beth 

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    Beth, I'm with you about always having recurrence on the mind (and mentally have excepted that I also would as you said throw everything at it if recurr), that is one of the reasons for this poll I am trying to get participation in...I wish we had more like Kelly that would list their onco number and if and when they had recurrence, esp., so we don't put too much hope into the score...You and Kelly both have very low scores, mine was higher 21 (the low end of grey area). With lump/rads/arimidex supossedly my recurrence score is 14% so I will never be able to take anything for granted...I question every little pain/wierd senstions on me....Best of luck to you what is your next step?...I just wish more women would participate with their Onco score and if and when recurrence...
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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    Beth, I'm with you about always having recurrence on the mind (and mentally have excepted that I also would as you said throw everything at it if recurr), that is one of the reasons for this poll I am trying to get participation in...I wish we had more like Kelly that would list their onco number and if and when they had recurrence, esp., so we don't put too much hope into the score...You and Kelly both have very low scores, mine was higher 21 (the low end of grey area). With lump/rads/arimidex supossedly my recurrence score is 14% so I will never be able to take anything for granted...I question every little pain/wierd senstions on me....Best of luck to you what is your next step?...I just wish more women would participate with their Onco score and if and when recurrence...
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  • Makratz
    Makratz Member Posts: 12,678
    edited August 2013

    My oncotype dx score was a 15 also.  Lump and rads, tamoxifen, no chemo.  No recurrence and I am 2 years and 3 months out.  Interesting thread.

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  • amym159
    amym159 Member Posts: 212
    edited September 2010

    It's always interesting to read about the experiences of the individuals on BCO, but even with a low oncotype score the risk of recurrance or metastisis isn't necessary 0%. The score just a more preonalised/specific predictor of the CHANCE of local ro distance recurrance. My  oncotype score was 13.So putting all the numbers together based on my personal situation (adjuvant online plus oncotype) my oncotype showed about a 50% lower risk of recurance/death within 10 years, and that chemo didn't lower the risk. So my risk is not zero, but I did not do chemo.

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    amy, I guess we all know that with BC, you either get recurrence or you don't so their is always a 50/50 chance regardless of onco score....I just thought that we could have an unscientific poll from those that are just as curious as I am to see how the numbers from us relate to the oncotypedx expected outcome...
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  • amym159
    amym159 Member Posts: 212
    edited September 2010

    I'd be interested in that too somanywomen-I was mostly responding to some of the other replies:)

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  • mymountain
    mymountain Member Posts: 184
    edited September 2010

    This is a great topic.  I'm just not sure that the oncotype dx has been around long enough to get an accurate count of who might get a recurr/mets.  I would think you would need at least 10 years of data to get a good idea if it is all it's cracked up to be.  I think thats what the Tailorx trial is trying to determine.  This question was posed to the expert on bco was answered in 2008.http://www.breastcancer.org/news_research/ask_expert/2008_06/question_07.jsp   

    Anyway I was an 11 two years ago... so far, so good, as far as I know

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    amy and mymountain, I guess there might not be a lot of data yet since this is so new...But I guess if we can get enough people interested, it may be very interesting....thanks both for any and all input...to help maybe keep this going.....
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    My score was 50.  That was 2 and a half years ago.  I have been on Tamoxifen for 2 years and 5 months.  No chemo, no recurrence. 

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  • kira1234
    kira1234 Member Posts: 3,091
    edited September 2010

    PatMom,

    That's great to hear. My score is 24 and just found out I can't finish my chemo. I will be taking one of the Estrogen reducing drugs  for 5 years.

    Karen
    Diagnosis: 6/1/2010, ILC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010

    PatMom and kira, thanks for adding score, nice to have a good variety of scores...We need all the help understanding what these tests are good for and how and if they mean anything at all...

    Kira, I chose not to do chemo, I have always been the canary in the cage, I am so chemically sensitive that if someone is wearing strong perfume, I can taste it on my tongue...If I ever have to do chemo, I will have to give it a try but I may be like you and not be able to take it...Hopefully those Estrogen reducers do their job...I also try to eat a healthy anti-cancer diet and and not so many estrogen promoting foods.....

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  • kira1234
    kira1234 Member Posts: 3,091
    edited September 2010

    http://www.genomichealth.com/Images/AbstractPDF/ASCO2010_Abstract_509.pdf

    I found this info today, and found it interesting.

    Karen

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  • somanywomen
    somanywomen Member Posts: 872
    edited September 2010
    Kira, I read your link, but don't really understand what it is saying...What did you get out of that info?
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  • kira1234
    kira1234 Member Posts: 3,091
    edited September 2010

    I may be wrong but to me it is saying if they look at the Oncotype DX score alone it isn't complete. They should look at the other info that our patholigy report also gives us. If I am reading it correct they feel somewhere about 30% of the scores would change. If that is true many of us  theoretically could move from one grading level to another. Am I wrong in how I am reading it?

    Karen

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  • somanywomen
    somanywomen Member Posts: 872
    edited August 2013

    Then it doesn't seem like  they could give us an accurate score...Wonder what we are to believe?..

     Edited to say.....You know it seems to me they do take path report also because I seem to remember that with my grade and tumor size along with arimidex would take my score of 21% to 14% chance recurrence....

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  • samsue
    samsue Member Posts: 757
    edited September 2010

    Somanywomen.... my 1st onc refused to give me the test. I'm planning on asking the 2nd one to do it for me. Not sure if she will because they're in the same practice but at different locations. We shouldn't have to beg for tests!

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