Oncotype DX test and chemo questions?

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Roberta2
Roberta2 Member Posts: 106
edited June 2014 in Stage I Breast Cancer

Has anyone had this test done on their tumor?  Did it influence your decision to do chemo or not?

I know with radiation they usually can only radiate an area once.  What about chemo?  For example, if you have chemo once can you have the same type of chemo again or even a different type later on in life if needed for another recurrence, etc.?

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  • pj12
    pj12 Member Posts: 25,402
    edited May 2010

    I had the Oncotype DX but it did not change any treatment plans. It did help me understand why my doctors did not recommend chemo (high ER + status and low mitosis rate = Arimidex more effective than chemo for me). My insurance paid  for it, thank goodness. Very expensive.

    I had radiation so don't speak with authority re chemo but think there are multiple choices and lots of options. Many women have repeated courses of chemo.

    Good luck!

    pam 

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

    Same here as Pam.  My Oncotype (ins also paid for it) came in at 13 (or was it 11?) and chemo was not indicated.   My med onc would have gone along with it if I had wanted to do chemo anyway but I am okay with my decision.  Did 33 rads and have been on Arimidex for 13 months now.  It is really very personal the choice you make for yourself as you have to be comfortable with it. 

  • YramAL
    YramAL Member Posts: 1,651
    edited May 2010

    I, too, did not have chemo based on my Oncotype score of 11. I saw 2 different oncologists after my lumpectomy-one believed in the value of the Oncotype test, one was really pushing for chemo solely based on the size of my tumor(1.5 cm) and sort of dismissed my questions about the Oncotype test. 

    I went with the onco who believed in the value of the Oncotype test, had it done, and got a score of 11. Therefore-no chemo for me.I feel good about my decision.

    I did 33 rads and am now on Tamoxifen for 5 years.

    Mary 

    PS-I had already decided before I got the results of the test that I would have chemo if I was in the "gray" area.  

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2010

    I don't know about being able to do the same chemo, but thinking probably you could. What stage are you? If you are Stage I with a lower grade tumor, I would say that the Oncotype would be a good idea  for sure, because it would give more peace of mind (if it's low you could feel good about skipping chemo, if it is high, then you'd feel like you would be making the right choice by doing chemo; if it's in the middle you'll be back here asking more questions!). Best of luck. Ruth

  • navygirl
    navygirl Member Posts: 886
    edited May 2010

    I was originally only going to do a double mx, and hormone treatment. Then my onco score came back @ 50...and suddenly I was doing 4 rounds of dd A/C, 12 rounds of taxol/herceptin and another 7 months of herceptin alone. You can only do a maximum of 6 rounds of A/C in a lifetime. I am not sure about Taxol but I would think if it didn't work the first time, why do the same one again? Just a thought, I don't know the protocol. Your stage a pathology are the biggest factors in whether the oncoDX could be a benefit in making decisions. Look for the "new OncoDX rollcall" thread on here...there is a LOT of information and various stories, scores and treatment decisions on that thread..

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

    Yes the oncotype did influence the chemo decision in my case.  My score was 23 - I was 44, so I did CMF -which is a very tolerable chemo. Life YramAL I had decided that I would do chemo if I landed in the gray area, and that is where I was - Undecided

    Certain chemos are once in a lifetime - I can't remember the term but there is a term that they use for chemos that you can only take once.  First tier?  That may be the term.  Adrimyacin (sp?) I believe you can only do once.

    Oncotype is a very helpful test - I havve seen grade 1's with higher oncotype than mine, and grade 3 with lower so you really can't just use your grade to assume your score.  My stats look the same as YramAL, but more score was double. 

    My insurance covered it.  Genomic Health who does the oncotype said that they help patients appeal insurance denials if that is a problem - I think most insurance in the US covers it. 

     Good luck with this!

  • Roberta2
    Roberta2 Member Posts: 106
    edited May 2010

    Yes, we are ordering the test, waiting for approval thru insurance.  Doc's say I am far from textbook case.  In short--

    2003-Stage 0-DCIS--three surgeries no clear margins, double mastctomy Feb 2004, no further treatment only follow up with general surgeon

    April 2010--Stage 1 IDC with DCIS--fine needle biopsy positive for cancer, core needle biopsy after 20 tissue samples (five in the main tumor) showed all benign.  Lumpectomy confirmed DCIS with IDC of 1.2CM.  Reincission for better clear margins and asicillary dissection of lymph  nodes 0/5 benign. 

    Findings of the Tumor with IDC above:

    Grade 2 intermediate

    Ki-67 high 59% (helps determines aggressiveness besides the grade)

    ER postive PR postive

    HER2 borderline--FISH test equals negative, no Herceptin indicated

    DOC's are baffled.  Usually if this was the first time of cancer, would do tamoxifen and probably radiation.  But because this is a second time (they are not even sure if recurrence from original cancer or a new cancer, either way does not matter still has to be treated) the doctors are not sure if they should do the chemo or not which they are hoping the Oncotype test will give them a clearer determination.

    Doctors said it is two fold, one, chance of any type of recurrence with early stage 0 cancer was less than 1% plus second, the fact i had double mastectomy with tram flap really should have decreased it even further.

    Right now, cancer doc does want me to do the radiation and tamoxifen at the very minimul, just waiting to decide on the chemo or not. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2010

    Get the test, and hopefully then it will be very clear what to do. Unless it is LOW, you probably will want to opt for chemo with how goofy things have been so far. Good Luck! Ruth

  • talbrig13
    talbrig13 Member Posts: 488
    edited May 2010

    I was stage 1 no nodes, tumor was 1.2 cm, but was 70% DCIS, so the idc was only 4mm, but I was grade 3, her2 positive.  So we did oncotype test and it came back 47!   So yes, that is why I did chemo.  Chemo would not normally be indicated for a cancer as small as mine was.

    I am currently waiting on biopsy results, as they found something on my mammo 3 weeks ago, possible recurrence.   Maybe just scar tissue from lumpectomy and radiation.   I am 3 1/2 years out. 

    Good luck to you, and yes, I would order the oncotype.   My insurance did not pay, and after 3 appeals, Genomic covered it. 

  • YramAL
    YramAL Member Posts: 1,651
    edited May 2010

    I've never quite gotten why some insurances won't cover the Oncotype test. In my case, the Oncotype test saved my insurance thousands of dollars that they would have had to pay for chemo. 

    Mary 

  • Susie123
    Susie123 Member Posts: 804
    edited May 2010

    My tumor was stage1, grade 1, and just under the 2 cm mark that would have pushed it to a stage 2. My nodes were negative. My oncotype test came back low, so I didn't do chemo, based on the oncotype score and the grade 1, which doesn't respond well to chemo anyway because the cancer cells are not much different than normal cells.

    Susie

  • Marion
    Marion Member Posts: 207
    edited May 2010

    Yes, my oncotype influenced my decision to do chemo.

    I saw 2 oncologists who, based on my tumor size, grade, etc did not recommend chemo, unless the oncotype score came back high or intermediate.

    Well, my oncotype score was 21, which is intermediate. So I did 4 rounds of Taxotere and cytoxan. Without the oncotype test, I would not have done chemo. With the oncotype test, it was clear I had to do it.

    Get the Oncotype test. This is the latest technology and analyzes 21 genes from your tumor. According to my oncologist, it supersedes everything else.  

  • marlenet
    marlenet Member Posts: 345
    edited May 2010
    My Oncotype was 25. (16 recurrence)  So I did 4 rounds of Taxotere and Cytoxan.  With out the test-I would not have had chemo.  My tumor was very small. 0.6 cm. Stage 1 Grade 2. er,pr + her2-.   Get the Oncotype test.
  • Roberta2
    Roberta2 Member Posts: 106
    edited June 2010

    Received oncotype test results today.

    Score 33 meaning if only do tamoxifen alone then have 22% chance of distant recurrence.  This would be a 1 in 5 chance of recurrence but if I do the chemo it will reduce the 22% to around 15%.

     Any thoughts?  I believe I will choose to do the chemo, then be sent to radiation oncologist to see if they want to radiation, and then 5 years of tamoxifen.

    Chemo would be once every three weeks for 4 cycles.  Taxotere and Cytoxan.  Port will be needed.  Steroids, nausea medications will be given and Neulasta shot the day after chemo.

    Any useful advice regarding port, chemo, radiation, etc. would be appreciated.

  • Char2010
    Char2010 Member Posts: 532
    edited June 2010

    Roberta - My score was 20 and I decided to do chemo.  Four rounds of TC every three weeks.  This Friday is my last one.  Side effects have been manageable.  Did not get a port and had a Neulasta shot only after the third chemo (doctor felt that my body will not have to work so hard to rebuild the WBC - but was doing pretty good w/o). Radiation will start 3-4 weeks after chemo. Good luck with your decision.

  • Marion
    Marion Member Posts: 207
    edited June 2010

    Hello Roberta,

    I think you do not need a port for 4 rounds of chemo. Who told you you needed one ?

    My oncotype was 21 and I did 4 rounds of Taxotere and Cytoxan every 3 weeks. Except from the fatigue, weird taste in mouth, and hairloss, I did fine on it. I never once took my nausea medication, I just never felt nauseous! I did have steroids to take on day 1, 2, 3 and 4 after chemo. They made me very hungry! I did not have a port.  

    The hardest chemo round was, psychologically, chemo # 3. Nothing to look forward to for chemo 3 compared to the other rounds.

    Chemo 1: you do not know what to expect so it goes by fast; Chemo 2: you are happy you are halfway through; Chemo 4: you're happy because it is the last one.

    I wish you the best, I hope everything goes well!

  • Roberta2
    Roberta2 Member Posts: 106
    edited June 2010

    Regarding port--they need to do this because they are no longer able to draw blood from my arm at all and are afraid the chemo will blow my veins which would not be good news.  Before the past month  my veins were having a hard time anyway.  In the past month I have had two surgeries with IV's and blood work and numerous tests with blood and IV's.  I probably have had atleast 50 sticks or more in the past month.  They no longer even attempt in my left arm inside of the elbow area to even get blood at all because they can not find the vein.  They have poked me everywhere else in that arm that you could possibly think was not possible.  The right arm looks great for veins but they are not to touch that arm because of possible lymphdema due to lymph nodes removed the old fashion way this time PLUS keep in mind this is not the first time I have had breast cancer.  I had it in 2003 so they have not used my right for 7 years which puts alot of strain on the left arm.

    Hope that explains it better.

  • marlenet
    marlenet Member Posts: 345
    edited June 2010

    Hello Roberta-My score was 25 ( 16% recurrence)  I did 4 rounds of Taxotere and Cytoxan every 3 weeks. I worked full-time the entire time. (except for treatment day and I missed 2 days of work on day 9 and 10 after my 1st treatment.  I picked up a viral infection.) A shot and  iv of fluids did me good.  Its a very tough decision.  I decided to do chemo because i was 44.( 1 week before my 45th b-day)  

  • Roberta2
    Roberta2 Member Posts: 106
    edited June 2010

    marlenet--very helpful information...i turned 45 this past February.

     First cancer--right breast stage 0 double mastectomy no chemo, rads, or tamoxfin.

    Second new breast cancer or recurrence in right breast--doc's not sure which--stage 1

    chances of new breast cancer or recurrence after first time was less than 1% and even lesser with double mastectomy.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2010

    Ask about doing dose dense two weeks apart with the Neulasta shots. Dose dense means you can get it over with quicker; for may be slightly more effective than the 3 week route. I did 4 rounds of chemo and taught school all through it, only missing infusion days (I had mine of Fridays, so that I'd have the weekend to recover). I had a port, which I didn't like at all, but it does save the veins. All yucky but doable.

  • llswong
    llswong Member Posts: 7
    edited August 2010

    marlenet, really surprised to learn that such a small tumour and low grading has a score of 25.  Is your tumour very proliferative?

  • marlenet
    marlenet Member Posts: 345
    edited August 2010

    My Proliferative-low proliferative (Yeah)  I guess it doesnt matter the size of the tumor,sometimes.  

  • llswong
    llswong Member Posts: 7
    edited August 2010

    Even more strange if yours is of low proliferativeness.   I happened to know the detailed formula for the calculation of the recurrence score:- of the 21 gene panel, those in the proliferation group are given the highest weighting, followed by the HER2 group.  In other words, if the proliferative index is high and HER2 is positive, the score tends to be high.  On the other hand, the ER group of genes will help to reduce the overall score. 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2010

    Grade is a huge indicator.  High grade usually means higher risk.  But, I broke that rule with a 12.  From what my onc says, the Tailor X trial is going to present a whole new way of considering the weighting of Oncotype.  Until then, we just aren't quite sure.  I went from low, to intermediate risk, simply because the trial changed the risk ranges.  A lot of oncs were puzzled and pissed by that.

    She also indicated there are hundreds of genes, something like 630 to be studied.  We have such a very long way to go to get the full picture on this stinkin' disease!

    I did really learn a lot, though, in studying recurrence.  There is a huge difference between recurrence and what is basically a body's predisposition to breast cancer.  My doctor spoke of curing my cancer.  She can do it in all likelihood, that is, THIS cancer.  Getting a local recurrence or new breast cancer, well, that's a whole other issue. And one not often talked about....

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

    I'm still trying to get an official oncotype test score. On my pathology report it says 24, but still no offical report from the organization. It has been 4 full weeks since the lumpectomly. Does anyone know if a ki64 13 score is high? My Mitotic score was a 1. I'm trying to decide Chemo or not, I see the onchologis on Tuesday, and find the 24 number a surprise.

    Karen

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

    Kira - I called genomic health to track my oncotype tissue sample.  Mainly, I wanted to make sure that the onc had the actual score prior to my appt.  They are REALLY nice - of course would not tell me the score but did tell me when they sent the information to my cancer center.  Do a search on Genomic Health - I believe they are in Redwood City, Ca.  Grade 1 would typically indicate a low oncotype score, but seriously I have seen women with grade 1 have high scores, and grade 3 have lower scores.  Good luck with this!

  • lago
    lago Member Posts: 17,186
    edited August 2010

    So is it true that they only do a Oncotype test on people with early stage? If you are stage 3 or 4 you don't get this test because they assume you will be getting chemo. Doesn't this test also let them know your risk of reoccurance?

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

    April,

    Thanks for the suggestion. They were very nice, and low and behold sent to the Dr. 2 weeks ago. Got a call 5 minutes later from his office, and guess what they have the reports. I will be picking them up later today.

    Karen

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

    Lago,

    You are correct only early stage only. Yes it lets them know your risk of recurrence. In my case with a score of 24 it gives me a 16% chance of recurrance some where else in my body.

    Karen

  • marlenet
    marlenet Member Posts: 345
    edited August 2010

    aprilgirl1

     I have seen the same. I have seen women with grade 1 have high scores, and grade 3 have lower scores. 

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