oncotype--chemo or no chemo

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lola12
lola12 Member Posts: 127
edited June 2014 in Stage I Breast Cancer

I have two IDC/ILC mixed masses 1.7 cm and .66cm along with some DCIS. I am stage 1, grade 2, er/pr positive and her2 negetive. No node involvement.

We are awaiting oncotype results.

I have one oncologist saying to do dose dense chemo no matter what the score and I have another doctor who 1000% disagrees with that thought. the second states if the oncotype is low, chemo is a waste of time.

Does anyone have any experience with this and can give me your thoughts?

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Comments

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

    Lola, That is such a hard decision to make. I think you need to know the oncotype results. An important thing is also your age, the younger you are the more the Dr's want to do chemo. In my case I am 57, my oncotype test came back 24 which is in the gray area. That gave me a 3% advantage doing chemo, my onc let me make the decision without trying to push me one way or the other.

    If you check out peoples decisions on this site you will see many of us are getting conflicting opinions from our Dr's about chemo. Good luck with your decision.

    Karen

  • QCA
    QCA Member Posts: 1,539
    edited October 2010

    Just recently I was in your shoes.  At my first meeting with the oncologist, he said he would normally recommend chemo but would make a final decision based on the oncotype test.  My score came back as 11, so he felt chemo would not provide a good enough benefit to justify my going through it.  He further stated that if we hadn't had the test done, he would most likely have had me do the chemo even at my age of 60.  You'll have more to think about once you get the results, and will be better able to make a decision.  {{{hugs}}}

    Kathy

  • lisa-e
    lisa-e Member Posts: 819
    edited October 2010

    Lola, like you I had two invasive tumors.  Normally treatment in multicentric/multifocal breast cancer is based on the largest tumor.  But that just doesn't make sense to me, so I asked to have oncotype scores done on both tumors and based my decision regarding chemo on both scores.  One tumor had a score of 16 and the other had a score of 8.   I figured out the statistical chance of either tumor recurring  based on these scores and the benefit from chemo.  I would have gotten little benefit over tamoxifen alone, so decided against it.  My oncologist agreed, although he originally recommended chemo.

    You should talk with the oncologist who is recomending against chemo if  you have a low oncotype score about his recomendation considering you have two tumors.  Is he taking that into account or is he ignoring the smaller tumor.   In my case, the smaller tumor had the higher oncotype score and while it was low enough for me to be comfortable without chemo, I didn't want to ignore it.

    If you are still conflicted after you get the results, I'd get a third opinion. 

  • lola12
    lola12 Member Posts: 127
    edited October 2010

    Im 46. with three multifocal areas of idc/ilc. I again talked to both oncologists and they stand with their opinions. No chemo vs chemo. I dont know the significance of having three areas but  Iwill request three oncotypes.

  • suzanneinphoenix
    suzanneinphoenix Member Posts: 208
    edited October 2010

    My OncoType result was 18.  I was told as long as it was under 19, no chemo.  So, I am not doing chemo.  Wait and get your results.  Hopefully, the results will be low.  Hang in there....I know how hard to waiting is!  Hugs :)

  • Paula1231
    Paula1231 Member Posts: 456
    edited October 2010

    My oncodx was also 18 so I am not doing chemo either.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited October 2010

    if the onco score is low does that mean you girls are not doing meds either???

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited October 2010

    Mine was 17 and it was no for me.

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

    grannydukes, I think the use of meds is another thing. My onco score was 24 so i was in the gray zone. I checked online and by doing chemo it reduced my score by 3% which at my age isn't much. If you check your score for the meds it will also give you that info. some are using the meds and others are not. i will decide by how bad my SE are.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited October 2010

    im gonna see the oncologist on the 27th.just checkin all possibilities out now.dont want to do chemo,rads or even the meds.reading all the posts and letting my gut and the onco test show me the way.I HATE THIS DAMN CANCER.

  • Paula1231
    Paula1231 Member Posts: 456
    edited October 2010

    Granny,

    I am going to be on tamoxiphen for a while.  I just read today that tamoxiphen taken with and Zometa keeps  the reoccurance lower and prevents bone mets.  I am going to ask for Zometa when I see the Onc tomorrow.

  • sarabhealed
    sarabhealed Member Posts: 179
    edited October 2010

    The only reason to do the Oncotype DX test is to let the score help one decide about Chemo. The research is pretty solid that low scores don't benefit from chemo, so why compromise your immune system and have to deal with the side-effects and after effects is you don't have too? I agree with the second oncologist, and wonder if the first guy is up-to-date about the value, purpose and research base of this test?

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited October 2010

    I just went to an information session about Breast Cancer Treatments at Gilda's club tonight.  They talked about about the onco test.  It seems that if you are in the low risk area, that chemo will be of little benefit, meaning not that the chemo isn't a benefit but that you don't NEED it as your recurrence risk is low and you can be treated with the estrogen blocking drugs.  If you are in the middle area, you should probably do chemo but there are women who opt not to.  If you are in the high area, you recurrence risk is high and you need chemo, even if you have a very smalll tumor.  In the past, ALL women got chemo which carries a lot unpleasant side effects.  Back then, they had no way of knowing which women with non lymph node invasion had more agressive tumors.  The oncotype test gives the doctors a better idea of which node negative women should get chemo and which node negative woman don't need chemo. If you have positive nodes, you get chemo.  If you are estrogen negative the test is useless, it only benefits estrogen positive women. So then if you are triple negative I would imagine you just get chemo.  I was estrogen and progesterone negative but Her2+.  I was told due to this I would need chemo even if the cancer had not spread to lymph nodes (which it did, which was a shock as the tumor was not very large, Her2+ can be more aggressive but now we have herceptin, it is a miracle drug and I feel very fortunate to have it).  I hope this helps. Personally, I would do chemo if my oncotype test was in the mid-range or high range.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited October 2010

    Though I have heard that with a low score and one node they are opting not to do chemo as well.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited October 2010

    I had one micromet and still said no to chemo. My onc agreed.

  • D4Hope
    D4Hope Member Posts: 352
    edited October 2010

    My score was a 20 and I chose to do four rounds of chemo. I tolerated it well. I think the decision is a tough one for any person dealing with this nightmare.

  • changes
    changes Member Posts: 622
    edited October 2010

    Grannydukes - the score you get with the oncotype test PRESUMES you will be taking Tamoxifen for 5 years. Your risk of recurrence will be higher if you do NOT take the Tamoxifen (or an AI). I am quoting from the pamphlet Genomic Health sent me:

    "The Oncotype DX test is intended to help determine whether or not you are likely to benefit from chemotherapy in addition to your hormonal treatment."

    Karen

  • Godlistens
    Godlistens Member Posts: 47
    edited October 2010

    Hi. I understand your confusion. I experienced the same thing three years ago. I got three opinions before I chose my surgeon and oncologist. One surgeon said "aggressive chemo" when she didn't even know all of the facts (i.e. no Oncotype score yet). One oncologist said "light chemo" since my prognosis was very good. One oncologist completely disagreed with the "aggressive" approach and said that chemo would probably have no benefit as we later learned when I received a low Oncotype score of 12. IT'S NO WONDER WE ARE ALL CRAZED!! HA HA. WE CANNOT GET A STRAIGHT ANSWER.  I guess in the end there is no right or wrong answer; you end up going with what your heart tells you. I read a lot about the Oncotype test and decided that I would trust it and the oncologist who told me that chemo would not benefit me so I did not do chemo.  It was a very tough decision, and I do second guess myself from time to time..but that goes with this breast cancer territory. Worry is part of it......but I am determined to find joy in every day despite the worry.......My advice to you is find a doctor that you trust, and go with your gut instinct on WHAT IS BEST FOR YOU!!  GOOD LUCK IN YOUR DECISION.

  • kayec
    kayec Member Posts: 6
    edited October 2010

    Stage 2, did not spread to the lymp nodes. Had double mast. No chemo.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2010

    I had the toughest time with this and opted out of chemo with a 22. I have had a lot of problems with infections, so I can not imagine what would have happened if I did chemo.

    But it is the most personal decision.

    How much benefit? What is your distant recurrence score. What can you walk around with. I just get hit with the SE's of everything, some have an easy time.

    As for the poster, I just don't know enough about multi focal to give advice.

    Good luck to us all.

  • Boo1139
    Boo1139 Member Posts: 1
    edited October 2010

    So I've read all the posts on this, and I know it's a personal decision, but do any of you have family history added in?   My oncotype came back as 17, also a family history with mother and aunt both not surviving breast cancer, I'm 45, ER/PR+, HER2-, found very early on screening mammo, just a smidge over 1 cm, no nodes.   I have 2nd opinion next week.   My oncologist is recommending chemo.   I'm assuming 2nd opinion will recommend it as well, but maybe he won't which will be worse if I have conflicting opinions because then the ball's in my court.

  • julie_dee
    julie_dee Member Posts: 14
    edited October 2010

    Barbara,

    Our situations sound very similar.  I do not have an oncotype result yet, and obviously that will impact the decision.  Just curious - I also had a micromet in the sentinel lymph node - .04mm, so tiny, a cluster of cells really - but since you had one positive node, what did your onc say about foregoing chemo?

    Julie

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited October 2010

    I had a micromet < .02mm in the sentinal node and the onc was fine with no chemo as he knew I would be doing rads.

  • Lindissima
    Lindissima Member Posts: 239
    edited October 2010

    Lola,  Your question took me right back to what I found to be the toughest part of the whole BC ordeal--making these difficult decisions, often based on  conflicting advice from our doctors.

    My onco, at a top cancer research hospital, originally said he was leaning towards chemo, but could not say with certainty until the oncotype score came in.  Mine was 13, so he recommended "No chemo,"  I got a second opinion from a highly respected oncologist at a differnet hospital who concurred.

    My onco thought I would get more benefit from bi-yearly Zometa infusions, so I went with that.(There are some nasty, though very rare sid effects from Zometa too.)

    My advice is:

    1.  Wait for oncotype score. Ask your doctor if he is also taking into account the fact that you have two tumors,mixed IDC/ILC, and your age if he recommends no chemo.

    2.  Get a second opinion.

    3.  Look into Zometa. Insurance is starting to cover it as more and more positive research come in.

    Best of luck to you!  Let us know your decision. 

  • tory
    tory Member Posts: 149
    edited October 2010

    Boo - do you know your BRCA status? My mother had BC but none of her sisters did and on my dad's side there aren't many women. My oncotype was 17 also and my onco didn't recommend chemo (though without the test he would have because of my age-39 at diagnosis) and I later found out that I'm BRCA negative, so that helped reinforce my decision.

  • barbofel
    barbofel Member Posts: 3
    edited December 2010

    kira- what did you decide to do- did you have chemo?

  • barbofel
    barbofel Member Posts: 3
    edited December 2010

    i am 59 and was diagnosed on nov 23, 2010 with invasive ductal breast cancer, stage 1, grade 1, er +, her2 neg. my onco score was 22 correlating to 14%. i am definitely going to have radiation and arimidex. One oncologist suggested chemo- taxatere and cytoxin while the other onc. said no chemo. Any thoughts??

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

    I am 44 and had a oncotype score of 15 ~ 10% risk.  Because of my 100% estrogen fed tumor, the fact that I did a BMX, no nodes/clear margins (no radiation needed), and am Stage 1 ~ oncologist really didn't feel that chemo would give me any more added benefit than the 5 years of Tamoxifen.  I readily concurred!

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

    I think it really depends on age. I was under 40 at diagnosis, and the studies show that aggressive seems to be the best way to go with that group.  I had an oncotype of 12, which pends Tailor X findings as to whether I should have had chemo or not.  It was a grey area, but with the unpredictability of my age, I was strongly advised to do chemo.  Additionally, at my hospital, the oncologists feel that the Oncotype is not entirely predictive in the grade 3 environment (which is what I had). 

    I think they'll know more soon for us ER+ gals, which is amazing.  And I'm afraid that what we'll find out is that I really didn't benefit from chemo.  But you work with what you have at the time, that's the moving target of cancer.

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

    barbofel, It really is a personal choice. How I made my decision was, if it came back would I regret the choice I had made. I decided if I didn't do chemo I would regret it so I chose chemo.

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