Intermediate Oncotype score...

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Aruba
Aruba Member Posts: 543
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I met with MO today ...Onco score is 26.  I still get confused looking at the graphs on the sheet but she explained that with hormonal that I will take, my chances of distant recourance are about 12% over 10 years and chemo would reduce that that by a third to about 8% so a 4% reduction.  SHe is saying there is some benefit but did not seem to disagree that I want to understand about long term side effects etc.  The nurse came in and said  if I choose to go for it, I would get 4 tx of Taxetore and Cytoxen and explained all the SE.  So choice is mine..to head to Chemo or to rads.  Sounds like biggest help to reduce chances in order (after surgery) are hormonal, radiation and then chemo with chemo having the least amount of help with  reduction in recurrence in my case.  I know you all will say to throw everything I have at this, but when she tells me I may have long term neuropothy etc...i have to ask if the long term SE are worth 4%?  Bring it on ladies...i need to hear from you.  I am 53, post meno, nodes clear, 1.5 cm (told me if i was under 1.o cm there would be no chemo discussion), ER+, PR+, HER - (1+).  I think of this like insurance policy...is 4% worth long term SE?  Please tell me your thoughts...

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  • Lee7
    Lee7 Member Posts: 657
    edited August 2012

    Do you have a copy of your Oncotype report? I ask because I believe a 26 must be a higher % than 12.  My Oncoscore was 20 and it says I have a 13% chance over 10 years on my report. 

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  • FLtricia
    FLtricia Member Posts: 140
    edited August 2012

    Hi Aruba, My score was 23. Our tumors were the same, 1.5cm. I was Stage 1 Grade 1, but there was a second area with DCIS, so I had mastectomy and 16 nodes removed (all clear). Before onco results came back surgeon and onc. both said no chemo. When results came  it was left up to me.  Two things helped me decide.  My husband and children wanted me to throw everything at the cancer I could to prevent its return.  My surgeon posed a question: If you don't have chemo and the cancer returns, can you live peacefully with your decision.  I had chemo (CMF) I was supposed to have 6 treatments but after 5 chemo went toxic on me. Onc said it was ok to stop if I wanted and I did stop.  No radiation because of mastectomy.

    Almost six years later I have mixed feelings.I wonder how much the chemo really helped.  But I have made peace because of the surgeons question.  I am the type person who would look back and second guess my decision if the cancer returned.  Also I gave my loved ones peace that I fought as hard as I could.  I was told I have severe osteopenia.  This was five years ago when I was 57.  Now I read chemo can have that effect on the bones.  Other than that (which can't be proven at this point), no major long term side effects.

    It is a most difficult decision. I wish you well.  Do what feels right for you, your body, and those you are close to.

    Regards,

    Pat

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  • Aruba
    Aruba Member Posts: 543
    edited August 2012

    Lee7- I do have it...It says i have a 17% on front page with score of 26.. but on the second page (where MO spent the most time on chart on left)..she said that with Hormone I am at about 12% (which i will do) and adding chemo would go down to next solid line at about 8%.  So 12-8=4% additional benefit from chemo.  I hope that I am understanding this all ok...nothing on here about using rads. 

    Pat- I hear you on family...this affects them too.  I have a 25 and 23 year old..both seem to side with no chemo again pointing to long lasting SE vs 4% reduction in odds.  They feel that if I have surgery, rads and hormone which has the most bang for the buck in reducing odds, then the smaller reduction in chemo vs SE may not be warrented.  Obviously, they say it is up to me and support me either way.  My head is a spinning.. Thanks for your comments!

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  • momof3boys
    momof3boys Member Posts: 896
    edited August 2012

    One thing to keep in mind- I know you have every intention of doing the hormonals, (I do too) but, there are SE with those too. A few women find them intolerable and stop. The Oncotype score assumes you do them for five years without quitting or quitting early.

    I did 4 TC and have no residual issues (knock on wood)

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  • cyano
    cyano Member Posts: 67
    edited August 2012

    Aruba - you have almost identical labs to mine. My Oncotype was also 26. I am doing chemo. What swayed me towards chemo was the prevalence of small ER/PR+ HER- tumors recurring over long time periods - that is 10-20 years and some recent papers showing the efficacy of TC chemo in reducing that risk. I'm only 41 so I want to do everything I can to maximize my chance of having much more time. If I were 30-40 years older, I would have probably opted out of chemo. My oncologist is also willing to go treatment by treatment monitoring for side effects. I will say that I had a rough start to chemo and ended up hospitalized for neutropenia, but now it's going better.

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  • Aruba
    Aruba Member Posts: 543
    edited August 2012

    Cyano, thanks for  your response!  I have decided to opt out of chemo.  I hope that I beat the odds with a 4% redcuction and that if like you say it has better chance of recurrence in 10-20 years...then I will have the aresenal to fight again with hopefully better science, treatments etc by then.  I also realize that anything could happen between now and then.  I hope you are recovered from you SE and are by now close to done with treatements if you had the 4 that I was going to have.  Do you have rads next?  Take care!

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  • Lee7
    Lee7 Member Posts: 657
    edited September 2012

    That's how I think about it now.  I hope the odds are on my side and that science and better treatments will be there in the near future. 

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  • cyano
    cyano Member Posts: 67
    edited September 2012

    I had my last chemo yesterday. :):):) I had a mastectomy so I don't need rads. In a month, I'll start with tamoxifen.

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  • Aruba
    Aruba Member Posts: 543
    edited September 2012
    HAPPY DANCE FOR YOU CYANO Laughing  What a feeling that must be.   I am really going untraditional..Met with my RO yest for first time and she feels I should enter a clinical trial for the rads portion which I think I will do.  It is basically 3 weeks of stronger rads with boosts included vs traditional 6 weeks plus a week of boosts.  If my onco score had been a bit lower she would have recommended 3 weeks anyway but with clinical trial you had to have onco of at least 25..I was 26.  So with me knowing I was doing rads anyway...I feel ok either way.  I'll start with Arimidex I believe after that.
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  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2012

    Aruba my score was 11 and I am Stage 2, Grade 1. My ONC would have recommended chemo with your score and in fact b4 I had the Oncotype test done my BS said the micromet they found in my SN would probably mean chemo. Luckily my ONC recommended I have the test and with that low of a score and they said the tumor was smaller than first thought I did RADS - 33 treatments and now taking Arimidex. Everyone is different and ONC dont always agree either but at the end of the day it is your life and your decision. Good Luck...

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  • Aruba
    Aruba Member Posts: 543
    edited September 2012

    My MO explained that benefits of chemo with my score were reduction of recurrence of 4%.  I was in interemediate range and after talking in detail to make sure i fully understood the Onco graphs and data with the MO and then again with the company who does the test, I was satisfied.  Hard to believe those stats are only on a pool of about 650 people.  I wish they had much larger pools.  I had nothing in SN and no LVI.  Every case of BC is like a fingerprint..so unique.  I hope one day the only thing one has to decide is to get the vaccine!   

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