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Long term "high oncotype test" survivors

Is there any long term survivors who have had a high oncotype score.  I know that this test is relatively new but I also know that it has been on the market at least 4 years.  So I know that "long term" regarding this test isn't very long term.  I had it done 3 years and 4 months ago.  My oncotype score was 52.  My onc told me that the test had been on the market only about 8 months.  I'm just curious about others who have had an extremely high score and are still clear (so to speak).  I am doing great with no signs of any kind.  Is there alot of others out there?  By the way, I love this site.

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Comments

  • LizinKS
    LizinKS Member Posts: 6

    Diagnosed just this past May, I'm not yet a few years out. I have just finished radiation and have started on Arimidex. I was one of those women on the high end of the great gray middle. I had a score of 30. (The TAILORX trial is being set up to measure the effectiveness of chemo in those with scores 11-26.) I had a very early stage IDC with negative sentinal lymph nodes and 2 cm clear margins. I decided not to take chemo since it seemed like overkill in my case (Never mind the side effects, cost and losing another two months of your life to treatment.) Although my oncologist I think would have suggested I do the chemo, I got less than an enthusiastic response from my surgeon and radiation oncologist.  Still, the oncologist says I have a very good prognosis.  Look again on the Genomics Web site, and you will see of all the women with scores 31-100, only 40% of the early stage women who did only tamoxifen, no chemo, had distant recurrences.  Genomics testing is still a work in progress, though I think it will be useful. The trick is to figure out why it recurs in some and not in others......Take care of yourself, don't look back, and enjoy each new day. ( I love this site, too.)

  • Katie2u
    Katie2u Member Posts: 43

    Hi Liz:

       My score came back the same as yours on the OncoDX 30.   I had 1.1 cm of IDC, Stage 1, Grade 3 with associated DCIS.   When my oncologist called me he was concerned about the 30 score and said he personally would do chemo because with Tamoxifen alone my chances of recurrence was 20% and this would lower it to 12%.   I got a second opinion who felt chemo was a necessity for that score.  31 and up is considered high risk and the average high risk person scores exactly 31 according to the OncoDX site if I read it correctly.   I would get a second opinion.  The test will also tell you if there is a mutation or overexpression of the P53 gene.  From what I've read, Adriamyacin may not work in that case scenerio and a taxane drug (Taxotere and Taxol) with Cytoxin may provide more benefit.  I would think twice about skipping chemo.  Good luck!

  • 1OUgirl
    1OUgirl Member Posts: 22

    Thanks for the response ladies.  I had Adriamyacin with Cytoxin for the first 4 chemo treatments and now I am finding out that Adriamyacin does not help some individuals.  I did have Taxotere after the AC and I believe that is defintely recommended.  If 31 is the average high risk score then I am most certainly high risk with a score of 52.  I would never have turned down chemo.  I said "give me anything and everything that might help me out".  Didn't even have to think about it.  I heard the score and said "Chemo, here I come". lol

  • FacingLIFE
    FacingLIFE Member Posts: 3

    My mast was Oct 31,   2006 followed by dose dense AC then 1 Taxol (to which I had a huge reaction) and switched to Taxotere for 7 more infusions. I had to stop a little early because of staph, strep, thrush and numerous side effects that were making me very ill. 

     My onc put me on Arimidex which I took for 7 months. I hate the stuff. It turned my 61 year old body into a 90+ year old body. My joints were extrermely painful. Walking and rising from a chair were really difficiult. After 7 weeks off of Arimidex, I was put on Tamoxifen. I have stopped taking it due to extreme cramping in my upper thighs. 

     Are there any "high" risk Oncogene scoring patients who are not taking adjunctive hormone therapy? I have started to think that quality of life is more important than quantity. 

  • Katie2u
    Katie2u Member Posts: 43

    Hi Facing Life:

         What was your Onco score?   I saw a Chinese Herbalist who will give me an herb that is an Aromatase Inhibitor like Arimidex.  He is also going to give me other herbs to counter the side effects of Arimidex.  If you would like to know about him, please private message me.  He is in NY.  I flew a thousand miles to meet with him.  He is well known.

    Katie2u

  • FacingLIFE
    FacingLIFE Member Posts: 3

    My onco score was 32. My oncologist called me late on a Friday afternoon to say the test score was high and indicated chemo would be appropriate. She "neglected" to say what "high" meant. I went to the Oncogene site and found the scores and their meaning. High begins at 30 and continues to 100. Finding out that I was near to the beginning helped only a little with the worry of recurrence.

    Does the Chinese herb cause side effects similar to Arimidex? Arimidex gave me terrible joint pain.

    I'm in California so traveling to NY doesn't appeal to me but what is life worth? Perhaps there is a Chinese Herbalist here that is also knowledgeable. I'm 15 minutes from San Francisco. Any ideas.

     Thanks for your words of wisdom.

    Barbara 

  • Katie2u
    Katie2u Member Posts: 43

    HI Barbara:

         I'm going to private message you.

    Katie2u

  • lili7
    lili7 Member Posts: 1
    Please private message me ... at [email protected] thank you
  • Sukiann
    Sukiann Member Posts: 88

    Hi, I want to bump this thread up to see if anyone else out there has a high oncotype score and hasn't had a recurrance.  My oncotype is 32 and I just finished treatment.  I feel like I'm just sitting here waiting for the cancer to come back because of the score.  I did 4 rounds of TC and 33 rads. Also lumpectomy for a 2.5 cm tumor.  ER+, PR-, Her2-.

  • talbrig13
    talbrig13 Member Posts: 358

    My oncotype was 47...I am still recurrence free.   But like you, I keep waiting for the other shoe to drop.    I am 3 years out.

    I had lumpectomy, 10 rounds of TCH, and radiation.    Herceptin for a year and am now on Femara. 

  • mmm5
    mmm5 Member Posts: 797

    Terry

    I was wondering why you got 10 rounds of TCH most of the gals with same stats had 4 or 6 what was the reasoning? Makes me think I missed something. As far as your 47 recurrence score it is pretty typical for those that were Her2, they did this test without the benefit of knowing what Herceptin would do.. Did you have a high level of estrogen positive or on the lowere end.

  • paml
    paml Member Posts: 6

    I have a high oncotype score also. It was 52 which really freaks me out. I am not HER2 postive.

    I got a double mastectomy/ 8 rounds of chem and 33 rads. I am not  what you would say a long term survivor( finished treatment in July of 09.) but I certainly hope to be.

  • 1OUgirl
    1OUgirl Member Posts: 22

    Hi paml.  I also had a score of 52 back in April of 2005.  So far I'm still doing great.  That was a freak out score for me also but as time goes by it will get much better.  I did 8 rounds dose dense chemo and 33 rads also.  Now I'm on Tamox.  My doc reminds me time and again that JUST BECAUSE the score is 52 dosen't mean we are doomed.  What it means is 'our chemo will be much more effective for us' and the chemo is not a waste of time for us as it might be for someone with a much lower score.  The MOST important stat is that we are still stage 1.  I am not HER2 positive either and I hope you and I both are going to be very very long term survivors.

  • Katie2u
    Katie2u Member Posts: 43

    I can relate to waiting for the other shoe to drop.  There is a heaviness that doesn't want to leave.  I heard a commercial saying that taking Aspirin is reducing recurrence rates by as much as 50% and for a brief few minutes I felt complete releif when I ran to the cabinet to take my aspirin.  That "light" feeling of carefree was short lived.  I hope I can get it back again. 

  • pjreeder
    pjreeder Member Posts: 1

    Hi There,

    I had an Oncotype test score of 50. I am ER+,PR+ HER-. I was stage IIb, grade 3 and have passed the menopause (age 59). I was pretty scared too.  Had a mastectomy and no radiation due to immune problems.  Did 8 rounds of chemo and tried Arimidex.  That stuff is nasty, and so I have changed to Femara.  I have itchy skin, get dizzy, short term memory problems, chemo coldness in hands and feet, neuropathy, achy joints, muscle cramping in legs at times and have little energy.  I am putting on weight too.  I am certainly tempted to stop the drug but am wondering what my survival rate will be without it.  There is supposedly a 34% chance of recurrence without both the infusions and the five years of pills.  I wonder if that is a sure thing or if I can take my chances by not continuing the pills.  Anyone else in my boat?  

    PJR 

  • RaiderDee
    RaiderDee Member Posts: 9

    As much as I hate to admit it, I've got you all beat.  The lab messed up my path report and we didn't know I was triple negative until I got my oncotype score back.  It was 84.  Normally they won't bother doing an oncotype test on a triple negative person because it's a given we will do chemo,  Thankfully the test score raised a huge red flag and I was retested and dx'd as triple negative.  I know it's neither here nor there because chemo was in my future regardless but getting a score of 84 is not comforting in any way.  I had a bmx and 4 rounds of AC and 4 rounds of Taxotere,  I'm not a long term survivor yet but I sure plan to be one.  Good luck and good health to everyone.

    Dee 

  • artteacher
    artteacher Member Posts: 1

    I'd like to read more encouraging stories from long term survivors with high oncotype scores.  I just, minutes ago, found out my score is 54.  I actually started with chemo (TAC) then discovered the tumor was growing, not shrinking, so they went ahead with a mastectomy and sent my tumor to Rational Therapeutics for tumor profiling.  Found out that it was resistant to all of the traditional chemo choices for BC.  Crap.  So now I will see my onco tomorrow and find out what other choices are out there for me.  I may be taking a trip to Houston for more help.  Any recommendations on that aspect?  I hate feeling like a ticking time bomb.  I've really GOT to get a grip on the fear and negative thoughts.

    Thanks, Patti

  • Makratz
    Makratz Member Posts: 1,605

    ((((((Patti))))))

    Sorry I can't help but wanted to send you a cyber hug.

  • Katiep1388
    Katiep1388 Member Posts: 44

    Hi ladies. Im 23 years old diagnosed August 2011 my oncotype score was 50 and im totally freaked out im ER+ but the oncotype said i was ER- anyone know what thats about?.. Im doing 4 AC / 4 Taxol and almost done.. Im doing my mastectomy in february prophilactic on the other side even though im negative for the gene mutations... A doctor told me the oncotype RRisk predicted is for distant cancer reccurance which totally freaked me out. Being node negative.... Do any of you know the %!after chemo an rads with a score of 50?????

  • Katiep1388
    Katiep1388 Member Posts: 44

    Hi ladies. Im 23 years old diagnosed August 2011 my oncotype score was 50 and im totally freaked out im ER+ but the oncotype said i was ER- anyone know what thats about?.. Im doing 4 AC / 4 Taxol and almost done.. Im doing my mastectomy in february prophilactic on the other side even though im negative for the gene mutations... A doctor told me the oncotype RRisk predicted is for distant cancer reccurance which totally freaked me out. Being node negative.... Do any of you know the RR after chemo an rads with a score of 50?????

  • Racy
    Racy Member Posts: 974

    Katie, google cancermath and you can input the details of your cancer and treatment and it will give you some predictive info about recurrence risk, independent of oncotype.



    So sorry you are facing BC at only 23. That must be hard in so many ways.



    Wishing you well.

  • squidess
    squidess Member Posts: 12

    I'm closing in on the 5 year mark.

    Don't let that score eat you up inside, ladies. Keep in mind that what it is really saying is that with TAMOXIFEN ONLY (no chemo) we're at high risk of recurrence. That's also on an older CMF regimen which is less effective than the chemo you'll likely receive. Put another way, it identifies those of us who are known to benefit hugely from chemo.

    The newer chemo regimens are more effective than CMF. Aromatase inhibitors are likely more effective than tamoxifen. Of course there are no guarantees with this disease, but you have NOT been given a death sentence. No no no! Stop freaking out!!!!! Or I will come over to your house and personally kick your backside with my pink blingy cowboy boots. And let's not go there because - dang it - they really hurt my feet.

    Personally, I find the thought that I benefited hugely from chemo very reassuring. 

  • QuinnCat
    QuinnCat Member Posts: 408

    Thanks Squdness- I needed to hear this. Bumping for more stories on this topic.

  • Rose12
    Rose12 Member Posts: 15

    My Score came back 61. I was not happy at all about that. I only planned for radiation. The doctor called me and asked if I knew of anyone I would like to do chemo with. I guess I had no choice in the matter. Starting next Wed. T/C X 4. Then 6 weeks radiation. Got to do it.

  • vickilind61
    vickilind61 Member Posts: 143

    Just found this thread.  My score was 51, which I know is high.  I should be starting my chemo at the beginning of June.  I have an appt with my Med Onco on Monday to discuss the path report from my mastectomy, which included some node activity.  I haven't said this to ANYONE in my circle yet, but the onco score has me more freaked than anything, and now add to that node activity and I am pretty freaked.  I know I will go on Herceptin and Tamoxifan and not sure what kinds of chemo she will want or how many rounds. 

    Rose, I agree with you; got to do it.  Whatever it takes.

  • Medwick711
    Medwick711 Member Posts: 2

    My oncotype test came back as a 22. I am ER+PR+ and Her negative.my lymph nodes are clear as are my margins. I am a stage 1 grade 2, 53 years old and no history of cancer in my family. Can anyone give me feedback about chemo. I am definetely leaning towards NO chemo, but will do the radiation and a hormone pill. Any feedback would be appreciated.





    Thanks

    Patricia

  • encoremom
    encoremom Member Posts: 37

    Hi Patricia.  My dx was similar to yours although I'm ER+PR- with a family history of BC.  I had the BRCA test and was negative but opted for a oophectomy anyway.  I had two tumors (I believe only one was tested) and my oncotype test came back as 24.  I was 52 at the time of my diagnosis, was HER2 negative, stage 1, grade 2 with no lymph node involvement.  I had a BMX, did not have chemo and have been on Arimidex for almost 4 years now.  I was told I would need radiation if I had a lumpectomy but I opted for the mastectomy.

    I was treated at Johns Hopkins where they stress that chemo is not recommended unless it is clearly indicated.  My oncotype test was in the intermediate range and based on other factors (size of tumor(s), no lymph node involvement, age, etc), the doctors there recommended no chemo.  They told me that based on their estimates, the chances of serious side effects from the chemo were just slightly less than my estimated benefit and they recommended that I not do chemo.  I chose to follow their recommendation although they told me I could have chemo if I really wanted it.   I think each situation (and personal preference) is different but I wanted to share my journey with you.  Maybe try asking your doctors what the risks of chemo are for you versus the relative benefit.  This intermediate oncotype range is a bear....  

    Sending good thoughts your way.

    Debbie

  • QuinnCat
    QuinnCat Member Posts: 408

    Vicki - but is your oncotype score really that high for Her2+ which is mitagable with Herceptin.  It is my understanding they don't do Oncotesting on Her2+ because they always use Herceptin and with Herceptin, they need to use chemo, so there is no reason to do Oncoscoring.  Also, as far as Her2+, I've seen scores in the 70's, so maybe yours is not so high in the Her2+ world?

  • cookiegal
    cookiegal Member Posts: 527

    I'm surprised so many her2+ people are getting oncotyped. None of the graphs include people who had Herceptin, so I am not sure the score really reflects prognosis.

  • 1OUgirl
    1OUgirl Member Posts: 22

    Hi Vicki, I had a score of 52 and it was the one number that had me freaked out for a while too.  But it has now been 7 years and I'm still cancer free.  I am so glad that I got that test done because my doctor would never have given me chemo without it.  I was Stage 1, 9mm tumor and no nodes affected.  I had 8 rounds of chemo and radiation.   I was my doctors FIRST high score.  She was in total shock because her words to me were "Let's do this Oncotype DX test just to be sure but I have never had a score come back high and I don't expect your's to be the first".  I have since asked her if there have been any onco test scores as high as mine and she told me "yes, but very few".  I am still going to my oncologist every year.  She STILL wants to watch me.  I figured after 5 years my appointments with her would be halted but she wants to continue seeing me for a while longer.  Here's hoping you have great success with few side effects.