Oncotype Dx Test Anyone?

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2014

    Warrior Woman - I would cut and paste your last sentence, but it doesn't work on the Macbooks yet. ;)  But how perfect you said that as I've been wrestling with my high Oncotype score, yet  medicore report of ER while having my IHC of ER test out at 95%.  Of course!!  If the effectiveness of Tamoxifen was measured using IHC, then IHC should be the indicator for effectiveness.  You made my day.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Thanks for all your help and support, Cookie Gal!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Kami - Great.  Everyone on here has helped me so greatly.  If I made your day then my day is made too!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2014

    Ok here's a thought, and sorry for hijacking your thread for a second WW. Just today I've seen three ladies on here with surprise tumors found in the final path, previously unseen on screening, whose Oncotype scores were very low.  Does anyone have any thoughts about low grade tumors not showing up, specifically on MRI's?  

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2014

    farmerlucy-I grew 2 wimpy tumors(that we know of). One on each side. Both were grade 1. One was only seen on MRI. That was the one with the positive nodes. What I came to accept after talking to my team & other potential team members, is that some low grade tumors can learn to travel(wimpy but smart). My smart, wimpy, tumor came back with an onco score of "4". Despite the fact that it learned to travel, it is unlikely that chemo would help my situation .The Genomic Health graph I received has me more likely to die if I did chemo(in the margin of error).

    Tumor grade probably has nothing to do with imaging(MRI,US,Mamo). They all look alike. That's where pathology & genomics comes in.

    When I hear on women getting a second BC diagnosis soon after the 1st, I wonder if it was there all along & was missed.

    My pathology report only mentions the 2 tumors identified prior to BMX. Both had clips in them. I'm not sure if my breasts were diced & sliced looking for add'l tumors. Maybe I had 3 tumors? Another wimp? probably not wise to call my tumors wimps, might come back to haunt meSick

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2014

    coraleliz - thanks for that. Yeah I figured it wouldn't matter. Like one of my docs said - my tumor was hiding. Oh well. No matter how long I look I'll never get every question answered.

    YIKES re: tumor wimps 

  • Maito
    Maito Member Posts: 11
    edited January 2014

    Hi ladies, 

    This is my first post on this thread but I have been reading everyone's posts and soaking up all the info. After waiting nearly one month I finally received my Oncotype score from my BS today - I have a score of 69!! I am not sure what the implications are but this definitely changes my treatment plan .  I was hoping to dodge radiation with a low score. I am now  seriously considering DMx.  Would appreciate any advice - thanks in advance!

    maito

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2014

    Maito-It sounds like you had the oncotype test for DCIS. It's newer. Not sure what 69 means. It would be quite high for IDC. If no one knowledgeable comes along, you might want to post your question under DCIS. Have you been to Genomics Health website? Hope you get some answers soon.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Maito - Talk with your oncologist.  For !DC, the Oncotype Dx test measure distant recurrence and not local.  A BMX only reduces the risk of local recurrence.  I think the information I am giving is correct but please check with your oncologist.  

  • Maito
    Maito Member Posts: 11
    edited January 2014

    Many thanks for your feedback. I have an appointment with an oncologist later today.

  • jpteacher1
    jpteacher1 Member Posts: 52
    edited January 2014

    It has been the longest five weeks of my life!!!  I had surgery on December 3.  I have Stage 1A Grade 2 breast cancer.  They weren't able to submit my tumor to Oncotype DX testing until December 14th because of Medicare rules.  Because of the holidays, my oncologist appointment was made for January 13th.  I've been sitting and stewing for the past five weeks waiting for treatment to begin.  Depending on my Oncotype DX score, I may or may not need chemo.  Since radiation would come after chemo, if needed, I have been in a holding pattern.  I've tried to keep myself busy, but there isn't a day that goes buy that I have not been occupied with concern about the "what if".  Hopefully nobody else needed to wait this long for results.

  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited January 2014

    Ouch. jpteacher that is so frustrating.  I am tired of all the waiting already. I know I'm going to have a hard time thinking of anything else after surgery while I'm waiting for the Oncotype score. I hope that you get good news after all this waiting. Keep us posted!


  • jpteacher1
    jpteacher1 Member Posts: 52
    edited January 2014

    Does anyone know if having a Grade 2 increases the odds of having a higher Oncotype DX score?   I was staged at 1A, grade 2 and my tumor size was under 1cm. 

  • blissful
    blissful Member Posts: 100
    edited January 2014

    I hear you on the waiting.. Had my bmx on Dec 2nd and don't have an appt until the 22nd. Waiting on oncotype also. My referral wasn't put in until December 30 . I'm on the breast and cervical cancer program through medical . maybe that's why they waited so long to send in??? Anyway wishing you the best of luck in your treatment planning.. keep us update

  • Njmom3
    Njmom3 Member Posts: 143
    edited January 2014

    I am in the waiting boat. Just saw mo on Monday and he is requesting onco type now.  Gee why can't they do this with all the other tests?  Mx was on dec 20th, have appointment scheduled with mo for jan 20 the as long as results are in.  I am praying not to be in the gray area, I will leave it up to mo's opinion, but I need to know I am doing everything I can to kick this cancers ass!  I have 3 daughters and a wonderful hubby and a lifetime I want to spend with them!  

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    The most important chart to look at is on the 2nd page of the report.  The first page has your score and you;ll know a lot when it pops off the page.  It's in big font and there is no missing it.  The 2nd page shows the difference in your recurrence risk with and without chemo.  Look at the point where  the lines separate.  This is where decisions start needed to be made.  With a score of 24 my recurrence risk is 15%.  Way too high for me!  With chemo it gets knocked down to about 8%.  Add Tamoxifen and we're now closer to 5%.  5% isn't 0 but it is certainly better than 15% and will make the difference between sleeping and not sleeping.  

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2014

    Ha Warrior Woman I taught you well :)...

    Look at the point where the lines separate!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Yes you did, Cookiegal!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2014

    WW - It's all relative, isn't it?  At 27% recurrence, chemo taking me to 18% and using an AI maybe 2% more than Tamoxifen, I'm still higher than you after treatment than before you even think about chemo.  Maybe that's why I'm still uncomfortable - , but really, the point is, it's the absolute % improvement you get from chemo, more than where you land,  considering the risks of some chemo.  If I got a 5% improvement with chemo, but my risk of cardiomyopathy, myelodysplastic syndrome or AML with some chemos was 7%, would I do chemo?  I'm just saying, weigh the risks and look into the possible risks of any particular chemo.  I have permanent peripheral neuropathy in my feet from Taxol - it's not fun.  I had the Red Devil (Adriamycin) and sometimes think of those risks that pop up years later.

  • NNN
    NNN Member Posts: 10
    edited January 2014

    Dear Kam170,

    May God bless you, finally I found someone who is looking at the situation the way I AM. 

    I'm still waiting for my oncotype results, I got the mammaprint results and it was boarder line. At the end of the day, the 15% reduction of the recurrence is out of 100 women at the same range of risk but, when you calculate it out of the survival rate (overall  rate) it will be much less depends on each case, in my case it will add up a 1.5% better survival rate where as I might face 1% leukemia and possible ??%  neuropathy and ??% infections...etc...I rather live a better quality life for 10 years than live with pain and sickness for the rest of my life which might be 10 years as well. Some one might say well, what if all the side effects were temporarily ?? well what if the recurrence never happened??

    At the end of the day, it's a struggle to decide. I hope and pray every day that my oncotype results come as low risk so I don't have to struggle any more with any treatment..and I wish that all of us find peace and guidance from the lord so we can enjoy few moments in life...Amen!! 

  • Lillypoppy
    Lillypoppy Member Posts: 68
    edited January 2014

    HI NNN

    Hopefully your Oncotype will be low hence making your decision for you. My histology results were similar to yours and I had resigned myself to no chemo and then my Oncotype had a score of 30. I feel your dilemma as I too had similar feelings about chemo and it's long term side effects and weighed up all the percentages like yourself. Having a little bit of medical knowledge I eventually after huge deliberation decided on a chemo regimen called CMF. Im no expert but it's known as "chemo lite" by some with I believe fewer side effects and for some no hair loss.  There is a huge thread on here and many ladies with a lot of knowledge about it. It may be worth a read for you if your Oncotype returns a higher result than you'd like. It did help in my decision making although it wasn't easy.  

    Here is the link should you want it. 

    http://community.breastcancer.org/forum/6/topic/24...

    Good luck for a low result. 

    Lilly. 

  • NNN
    NNN Member Posts: 10
    edited January 2014

    Dear lilly,

    Thank you for your reply, You are scaring me  :(

    Was your mammaprint borderline too before you got the oncotype test?

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Hi Everyone - After receiving a score of 24, I met with two oncologists who both said it was an obvious call for chemo in MY SITUATION.  In other words, a 24 for another patient may result in a different recommendation.  For example, I am 52 yo and hope to live another 35 years.  In my case, due to my age and other aspects of my cancer, chemo is a smart move.  However, if I were 72 yo the recommendation would be to skip chemo.  

    The worst part is the waiting.  I started this thread as I was losing my mind with fear.  I start chemo on Tues. and I am far less afraid today than when I was waiting for the damn results.  

  • funthing42
    funthing42 Member Posts: 418
    edited January 2014

    Hi

    Try not to worry.  Many women have had breast Ca without the opportunity of having Oncotype test.

    It's a hard time and go forth with no regrets . 2009 I was one number left the curve of whether I would benefit or not from chemotherapy. 

    Totally sucks! Hang in there.  :)

  • Lillypoppy
    Lillypoppy Member Posts: 68
    edited January 2014

    Dear NNN

    I am so sorry if I scared you. It wasn't meant to. Just wanted to share that we understand your fears and that the waiting is horrendous. 

    I echo everything WW said. I am 42 and this was an influencing factor for me. Like WW said the Oncotype is just another piece of information in the whole picture. It's such a hard time waiting.

    Lilly x

  • jpteacher1
    jpteacher1 Member Posts: 52
    edited January 2014

    I finally met with my oncologist this past Monday to receive my Oncotype DX score.  It took six long weeks for me to receive this information.  Medicare patients have to wait two weeks after surgery before the hospital can submit for testing.  Then, because of the holidays, my results took longer.  Anyway, six weeks of waiting caused a lot of stress!!

    My Oncotype DX score came back at 23.  My oncologist said I had a 15% chance of cancer coming back, but with Tamoxifen that percent would be reduced.  She did not recommend chemotherapy for me.  I'm 67 and have already gone through a hysterectomy.  She also said that every patient has an individualized diagnosis/treatment plan and NOT to worry if my plan was not the same as anyone else.  I trust my oncologist--she has been one for a very long time and is highly respected throughout the field.  I trust her opinion.  While I'm glad that I do not have to undergo chemo, I totally understand why someone else would need it--even if they had the same stage, grade and DX score.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    jpteacher - YEA!  The waiting is over and a clear decision is made.  It is important to know that the score alone is not the only decisive factor as was the case for both of us.

  • NNN
    NNN Member Posts: 10
    edited January 2014


    Dear ladies,

    My oncotype result came in yesterday and it's low risk 15....THANK GOD..No chemo.

    Next is the radiation and the anastrozole.

    Thank you every one for helping me during my waiting game.

    May God bless you all.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2014

    NNN - Yay! Good for you! Good luck with the rest of your treatment.

  • NNN
    NNN Member Posts: 10
    edited January 2014

    Will2surviv,

    Good for you, at least one good result.

    I have lost 16 pounds since I was diagnosed with BC in November 2013, I look now like a ghost but, God is good and will hold our hands to safety.

    May God bless us all

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