Help! Oncotest 12. Chemo or No Chemo

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2012

    For younger patients, it might be a good idea to talk about Oncotype in the younger population.  I have read it is not well studied in younger survivors, particularly the under 40 set.  I didn't consider my Oncotype at age 39 the only deciding factor.

  • Lisa614
    Lisa614 Member Posts: 42
    edited June 2012

    Hi folks, I'm new here and enjoying all the good information.  I am 51, just diagnosed a month ago at age 50 for IDC, node negative ER+, 1.5cm BC and I just received results of Oncotype test today and it is 21.  This puts me in the intermediate risk group.  I haven't read too much on this thread on whether or not many have had this high a number and what they decided to do regarding chemo.  My onco has pretty much left the decision to me, as with this group, it is a big unknown as to whether or not chemo will benefit more vs. risks.  THis is agonizing because had the number put me in the high risk, I would def. have chemo and if it were in the low risk, I would not.  I am in the middle.  Any words of advice and/or encouragement?    She is recommending Carboplatin and Tamotere and Tamoxifen, of course.     What would you do?

     Thanks sisters. 

  • Lisa614
    Lisa614 Member Posts: 42
    edited June 2012

    Add on to previous...I would get 4 cycles over 3 weeks.

  • bevin
    bevin Member Posts: 1,902
    edited June 2012

    Dear lisa, If I had pos nodes, or any vascular invasion, that would make me choose chemo, in spite of any low, intermediate or high score.

    Good luck to you.

    Bevin

  • Lisa614
    Lisa614 Member Posts: 42
    edited June 2012

    Well, no my lymph nodes were negative.  Had Sentinel node dissection with lumpectomy on May 16, 2012.   I am ER/PR+ and HER2- (but I noticed my HER2 score was 9.9 with positive at 10.7 so that is close).  Too many numbers. 

  • rgiuff
    rgiuff Member Posts: 1,094
    edited June 2012

    In your shoes, I would probably not do chemo, just to avoid the toxic and possible long term effects, but definitely would do the tamoxifen and I would make healthy lifestyle changes.  Exercising regularly has been proven to lower risk, as well as cutting down on alcohol and increasing fruits and veggies.  It's very good that there were no lymph nodes involved.  Do you know the grade?  Are you having lumpectomy or masectomy?  I was diagnosed 4 years ago at age 47.  I had lumpectomy and radiation, then did 3 years of tamoxifen and am now deciding whether to continue on with an aromotase inhibitor.  I don't like the changes that natural menopause has brought, and feel like an AI might make things worse.  If I stop here, I feel that I've done enough already.  I am more about quality of life versus quantity.

  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012
    Lisa614: I share your agony trying to decide to not/to have chemo. But I do agree with rgiuff, if I dont have LVI I won't do chemo. But that is my opinion on my case. Everybody is different. This board has help me a lot when I was trying to make a decision myself. I'm glad I got out from the se of chemotherapy. You might want to get a second opinion or even 3rd. Try to talk to somebody that could explain in details to you the benefits of not having/having chemo. Goodluck to you.
  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012
    Lisa614 Check this thread: NEW Oncotype Dx Roll Call Thread
  • bluepearl
    bluepearl Member Posts: 961
    edited June 2012

    Chemo usually doesn't work too well with low grade tumors, so I wouldn't do it. I didn't do it. I had mastectomy and no rads, no chemo...just tamoxifen and even that they said would provide only modest benefit.

  • txmomof2
    txmomof2 Member Posts: 131
    edited June 2012

    Califgirl12 - sorry this is late but I just found this thread.  You mentioned:

     "She was very happy and told me that there are many things that I can do to help reduce that onco number down even further."

     What kinds of things did she say you can do?  I'm guessing exercise and eating healthy but anything else??

  • gardengumby
    gardengumby Member Posts: 7,305
    edited June 2012

    I'm confused...  I thought the oncotype score was all about how your cancer would react to chemo?  How can you reduce that?  

  • lisa-e
    lisa-e Member Posts: 819
    edited June 2012

    You can't reduce your oncotype score, which tells you your chances of having a recurrence, assuming you take tamoxifen for five years, and how much you would benefit from chemotherapy.   You might be able to reduce your chances of recurrence through diet, exercise etc.  I think that is what califgirl's onc meant.

  • Lisa614
    Lisa614 Member Posts: 42
    edited June 2012

    Just curious, Lisa-e, what was your Oncotype score?  Mine is 21 and it puts me in the middle group of which they don't know if chemo helps or not.   I ultimately decided to have chemo because I want to fight this thing as aggressively as I can now.   My tumor was 1.5cm.  

  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012

    Lisa614 As long as you are happy with your decision, that is what matters most. I did mine and I'm 100% happy with it. Goodluck to you and wish you the best.

    Gardengumby Oncotest tells you your recurence rate.On your report there is a section also that would tell you how much you would benefit from chemo. But they don't use just the Onco score as the bases for treatment. They have to look at the whole picture. If it's slow growing, my MO said I did not have to worry about distal recurrence. The only reason I'm taking tamoxifen now is to take care of micro invasion if in case I have it somewhere in my body. My aunt had BC and mastectomy at 39. No chemo, no tamoxifen. It's been almost 30 yrs now, no recurrence even in the right breast. Her sister who's 80+ now is the same thing. My friend had Lumpectomy 16 yrs ago. With chemo and rad but no tamoxifen. No recurrence either. But of course not all cases are the same. Maybe they are just the lucky ones.

  • 12allie
    12allie Member Posts: 3
    edited July 2012

    Hi Lisa, You may have made your decision already but I just saw your post and I thought that I would reply. I am 68, was diagnosed in March with ILC stage 11A, grade 3, tumor size 4x3 and Oncotype of 21. ER & PR + HER2- and had a lumpectomy. Like you, the decision was mine whether to have chemo or not and my oncologist said that if I were her friend or a relative she would recommend that I have chemo. She really expected my Oncotype to be higher because the cancer cells In my pathology are aggressive. I chose to do chemo and on Fri I will have my last of four treatments of Taxotere/Cytoxan . I have to say I have been very fortunate. The side effects have not been awful and I only have a few what I call down days where I feel fatigue, some bone pain and one evening I generally have a low grade temp. I get a Neulasta shot post chemo to help with the white blood cell count and I take an antibiotic starting the 4 th day after chemo to help avoid any infections. I also have a metallic type taste but that doesn't stop me from eating. I have lost most of my hair but it sure makes it easier for the summer not to spend a ton of time blow drying my hair and everyone loves my wig which I don't wear all the time. I'm into great looking baseball caps. I walk or ride my bike, eat well and make sure I am well hydrated. I am leading my life as usual. The remainder of my treatment will be radiation followed by hormonal therapy. Good luck to you and stay positive which I think is essential.

  • Belinda977
    Belinda977 Member Posts: 381
    edited July 2012

    What percentage was your ER/PR ?  Mine was 99% with an oncotype score of 19.  No chemo for me.  MO feels the Tamoxifen is more beneficial with my low grade tumore because of my high horomone receptors.  If I wanted chemo I would have to go to a different MO.  Risks too high (in his opinion).

  • 12allie
    12allie Member Posts: 3
    edited July 2012

    The pathology report that I have doesn't give a percentage but as I said, the cells I have are aggressive and my tumor was a pretty good size . If it were as you, a low grade and a smaller tumor I'm sure I would not have had chemo. There are just so many variables that go into deciding the course of treatment. I will have hormonal treatment also as I said once I'm done with radiation.

  • Lisa614
    Lisa614 Member Posts: 42
    edited July 2012

    Thanks for the reply, 12allie. I did decide to have chemo. Started July 5th so I'm in day 6. I can honestly say I think I have the same SE's as you, however, my bone pain and overall body aches have been debilitating. I'm no wimp but day 4 and 5 kicked my butt. I was wondering if these same type and severity of symptoms can be expected each treatment? Do they ever get worse as it goes? Better?



    Thanks again....glad to hear you are on 4/4! Best to you.



    Lisa

  • Lisa614
    Lisa614 Member Posts: 42
    edited July 2012

    I don't have a percentage for Er/Pr + but i can see from the scores that I'm pretty darn posititve. The one thing that concerned me was my HER2 score. Even though it fell into the negative category, the score wason the upper end, close to the cut off for negative/positive. I keep forgetting to ask my onco about this. I've experienced pre-chemo chemo brain.



  • lisa2012
    lisa2012 Member Posts: 652
    edited July 2012

    Hey, I just found this thread. Funny, with my oncotype score of 38 chemo was the deal. I didn't get to wonder about the short or longterm side effects. Just hope I'm lucky.

    Here's a funny thing: my oncotype said I was >5% ER which they called negative. The test is for ER positive women. Yet my MO's IHC slides showed 30% ER positive. The discrepancy was unsettling. Made me wonder if the 38 was a valid score too! However, being BRCA! pos, grade 3, K176 43, (though nodes clear, hurray) led me to chemo anyway.

    Now 3 weeks post last TCH4. Hurray!

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