Oncotype

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Angeldj
Angeldj Member Posts: 9
edited June 2018 in Just Diagnosed

Good evening all! I was diagnosed May 11,2018. I have IDC stage1b, 2 lymph nodes out of 5 with micromets. Er+ Pr+ HER - Both 95%, Stage 2. 1.5cm, and had a lumpectomy on May 31. Clean margins. Fast forward to today, I just found out my oncotype score which is a 19. I'm clearly on the fence about whether to do chemo or not. I've done countless researching and I go in the morning to see my oncologist. My nurse told me he's going to recommend it, but honestly, I'm leaving toward no for lots of reasons. My question is.. anyone here have this score or around it and opt out of chemo? If so, how long have you been ned?

I have honestly drove myself crazy with all this. I spend countless hours and sleepless nights researching. I can't wait to get tomorrow over with and glad it's finally here.Thanks ladies:)

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  • carmstr835
    carmstr835 Member Posts: 388
    edited June 2018

    Hi Angeldj,

    I had a score of 19 and 17. They look at your age, under 60. Probably chemo. Over 50+ no chemo. But that means in 20 years it will have a high probability to matastisize to stage 4 and if your 60+ you will be over 80 and they figure you might die of something else, and spare you the side effects of the chemo. The reality is stage 4 cancer means you will be in treatment for the rest of your life. I believe chemo for me would be better tolerated while I am rather healthy than when I am 70-80 years old. I chose to do chemo against my MO's suggestion. I was 61 when diagnosed with bilateral IDC. You will have to do the hormone blocker drugs for 10 years with or without chemo. I also chose NOT to do the hormone blocker drugs. Because of the possibility of cognitive decline due to the loss of estrogen in your brain.I put all my faith in the chemo and radiation. I was also diagnosed as HER2+ and that would negate any geno type tests like Mammaprint or onca scores.. I was also lymph positive with extra nodal extension. 2/15 positive, one lymphnode was 2.6 cm.

  • Sita26
    Sita26 Member Posts: 44
    edited June 2018

    I would do it. As much as it sucks :(. If the score was 17 or below I might say otherwise

  • deedledee
    deedledee Member Posts: 63
    edited June 2018

    My score was also 19. I chose no chemo for various reasons due to likely side effect concerns. I will say I am just over 60 and did not have any lymph node involvement plus early stage. Taking AI for 10 years likely. So far after 8 months on AI, I have experienced minimal SEs. Each of us has our own road to travel with the decisions however. I did feel better that my decision was backed by the recent TailorRX results just announed.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Have you seen the recently published guidelines?

    Personally, I wouldn't do chemo you are so strongly hormone positive I would do hormone therapy. But age is a factor. I didn't see you had nodes involved tough decision.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Angel - Chemo does not benefit low oncotype score. For me, there was less than 1.6 % difference in the risk of recurrence in 10 years if I took 5 years of Tamo. It may be different if you are young. How old are you? According to the new guidelines, you are still low risk even at 19. I am Oncotype 17, age 54 and did not do chemo. Will take AI for 10 years and hopefully they will have more treatment, if not a cure by then.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2018
    I agree that it depends on your age. The Tailorx results say that under 50 should still do chemo if your Oncotype is in the intermediate range.
  • vampeyes
    vampeyes Member Posts: 1,227
    edited June 2018

    My score was 21, I was 41 at diagnosis. I did not do chemo, but I did not have any positive lymph nodes.

  • Angeldj
    Angeldj Member Posts: 9
    edited June 2018

    Good morning! I am 48. I go in this morning for the big meeting to discuss it all. Of course after being up off and on all night, right now I’m leaning toward no chemo. Lots of reasons factor this but I will see what they say and get a second opinion also. I will update after my appointment. Thank you all.

  • beach2beach
    beach2beach Member Posts: 996
    edited June 2018

    Good luck at your appointment. Ask all your questions and I'd say honestly, go with your gut feeling after weighing it all. Thoughts are with you.

  • pupmom
    pupmom Member Posts: 5,068
    edited June 2018

    Sorry to say this, but I can't imagine refusing chemo at your age and with 2 positive nodes. If you have medical problems that would put you at great risk from chemo, or various kinds of chemo, you should discuss this with your doctors. Best wishes whatever you decide.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Angel, do what you think is right. Don't be strong armed.

  • Angeldj
    Angeldj Member Posts: 9
    edited June 2018

    Afternoon ladies! My oncotype score was 19 with positive nodes, and they ran it with negative nodes and the number was still 19. 12 percent chance without chemo, 6 with for recurrance. They want me to do 4 rounds of chemo. They want me to do CMF. He says it's the least harsh. Then 6 weeks radiation. So... I have 2 weeks to think on it before my next appointment. If I opt to do chemo, I will start that day. They do the cold cap so I have that option, because he told me 70 percent chance of hair thinning on this chemo? So I'll prob do the cold cap if I go this route. But that's the least of my worries.

    This isn't my only medical condition is the reason I'm having such a hard time deciding on no chemo. Along with other concerns

    I want to thank everyone for their replies. I really appreciate it. And I wish everyone the best of luck in their journey as well. It's tough.


    Angel



  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited June 2018

    19 and age 48 is still a grey area, especially with the nodes. I had a 22 and am almost 50 (but with clear nodes)—decided against chemo after reading the TAILORx results. My MO was on board with that, more so than he was before the results, so you might be surprised.

    Definitely report back your oncologists take. And don't let anyone rush you into a decision.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2018

    I agree with Meow. Your body, your life. Just make sure not to second guess yourself or look back and wonder what if...

    Diane

  • Vidya99
    Vidya99 Member Posts: 14
    edited June 2018

    Hi ladies. What happens if someone decides not to go for chemo? Are there any insurance issues? Will insurance cover the treatment if there is a relapse in future

  • Angeldj
    Angeldj Member Posts: 9
    edited June 2018

    Good morning ladies!  I am currently waiting for my second opinion appointment this Monday.  After speaking to the Oncotype rep, he explained to me that chemo would only benefit me by 2 percent.  I'm still at a loss on how to proceed, so off to get a second opinion and more waiting.  This waiting around and wondering is torture for me.  I find myself always thinking, researching or speaking to someone about the situation.  I honestly can't wait until I can just move forward with something and stop doing this. I have days where I'm okay, then days where I break down, cry and wish I could turn back time so all this would go away.  

    Vidya99, I have no clue on that matter.  I would be interested to hear what others have to say as well.  

    Hope everyone has a great day :) 

    Angel 

  • Lisey
    Lisey Member Posts: 1,053
    edited June 2018

    Hi Angel,  I had a score of 20, was 41 at the time.   I was on the fence, so I got the second opinion in the mammaprint which does NOT have an intermediate score.  It came back "Low risk" which was surprising, but I took it gladly.  The insurance didnt' cover it, but I was told the max I'd pay out of pocket was $500... worth it to have a second genetic opinion of the tumor.  I never have gotten bill - 2 years later.  I highly suggest people with intermediate Oncotypes ask their doctor to send a part of the tumor to Agendia's Mammaprint.  You will find out if you are Luminal A or B with their Blueprint test and also Low or High risk with their mammaprint (they do the suite of tests together).  It saved me chemo and definitely cemented my decision. 

  • OCDAmy
    OCDAmy Member Posts: 873
    edited June 2018

    I had score of 19 with two positive nodes. My tumor was pretty big so we decided to have chemo. I had four rounds of TC and it was really not that bad. For me, the nodes made it a no brainer. Best of luck making your decision.

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