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Information on decisions with Oncotype score

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135

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  • ZEKE
    ZEKE Member Posts: 59
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    Nancy

    Thank you

  • Appyfan
    Appyfan Member Posts: 55
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    Zeke, my oncotype was 49. My BS had been telling me no chemo based on my other results, so it was a major slap in the face to get those oncotype results and be told to have chemo. My first MO recommended AC/T for chemo, but also offered TC. She wanted 6 rounds of that, if I could tolerate it. My 2nd MO recommended 4 rounds of TC. His only response when I asked for a line of demarcation (pathology-wise) was that he didn't feel AC/T was worth the risk (heart, which was what I was concerned with). Unfortunately, even though all these doctors have great reputations, and most of my treatment was done at a NCI facility, I still feel like I'm getting cookie cutter treatment, and have to do a lot of research on my own

    Sorry, rant over. To answer your question, I had 4 rounds of TC. I have some lingering shortness of breath (finished chemo 10/2018), which I think will eventually resolve, and some very mild neuropathy in my hands (only really noticeable in extreme temperatures). 20 sessions of radiation. I continued working full time through it all, but took off 4 days plus a weekend for each chemo cycle. Did radiation on my lunch hour. I'm now on Anastrozole, but only taking it every other day (since January).

    I'm glad you are getting a second opinion, and I hope you find an MO who you are 100% confident in.

  • moth
    moth Member Posts: 3,293
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    Zeke, my Oncotype also showed me as triple negative (like yours). If I remember correctly my score was 65 but I was also told that Oncotype is not validated for Triple Neg. Our standard protocol here is chemo for triple neg, and esp so if they're Grade 3. I had chemo & radiation. I finished radiation in Sep 2018. I went back to school while I was still doing rads and have been in a full time very intensive program ever since. I feel good, my brain is fine (no chemo fog), my hair is growing back. Cancer treatment is already becoming just a memory.

    Because my initial biopsy showed me weakly ER+, we considered hormone treatment but in the end, my team could not make a recommendation for or against it & I decided against it.

    Have you tried using the Predict calculator to see the benefit you'll get from chemo? https://www.predict.nhs.uk/predict_v2.1/

    For me the point of chemo was to prevent distant (ie stage iv) recurrence & increase the odds of survival.


  • ZEKE
    ZEKE Member Posts: 59
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    Hi Moth,

    Thanks for your reply.  We are waiting on a discrepancy with the pathologists. My 3 Biopsies that came back were 70% positive.

    When the ONCO score came back it was 41 with triple negative (a low triple negative on all 3). I had surgery 1/18/2019 and had to have some fluid drained under my arm twice so the healing process went slowly.  None the less while I wait I am moving forward with radiation first so I at least get something done while I am waiting for the results and a second opinion. (which I also have to wait for to see what the results actually are)  I of course will lean towards chemo I have accepted it unwillingly.  This all came down so very fast for me.  The radaioloist is only doing a partial radation - 3 weeks at she felt the tumor was so tiny at 0.7 cm it was unnecessary to do the entire breast. At least that is what she said.  I also only had a lumptecomy but see that many women has full breast removal with such a small lump as mine even.

    Its a night mare isn't it!  UGH!




  • ZEKE
    ZEKE Member Posts: 59
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    Hi Appyfan,

    Yes I too got that slap in the face.  Told with such a tiny tumor at 0.7 cm all I would need was partial radiation for 3 weeks and hormone therapy.

    I thought well I could handle that.  Then my ONCO score came in. 41 triple negative and life changed.  Now they wanted to do FULL chemo also.

    Adrianmycin & Cytoxan IV every 2 weeks for 4 months then Paclitaxol IV Weekly x 12 weeks. 

    When the ONCO score came back it was 41 with triple negative (a low triple negative on all 3). I had surgery 1/18/2019 and had to have some fluid drained under my arm twice so the healing process went slowly.  None the less while I wait I am moving forward with radiation first so I at least get something done while I am waiting for the results and a second opinion. (which I also have to wait for to see what the results actually are)  I of course will lean towards chemo I have accepted it unwillingly.  This all came down so very fast for me.  The radaioloist is only doing a partial radation - 3 weeks at she felt the tumor was so tiny at 0.7 cm it was unnecessary to do the entire breast. At least that is what she said.  I also only had a lumptecomy but see that many women has full breast removal with such a small lump as mine even.

    Its a night mare isn't it!  UGH!

  • meow13
    meow13 Member Posts: 1,363
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    zeke, my oncologist was really firm about starting chemo. He said if I didn't start in 2 weeks he wouldn't offer it again. It was December 22 when he wanted to start amd wouldn't consider waiting until January. I was diagnosed in October and had the mastectomy in November. That probably convinced me I wasn't able to take anytime and I just felt a gut instinct to not do it. But I also considered my 95% er status and low grade. At the time I didn't have much knowledge of what it meant to be pr negative. Even now there is little known on that combination.

  • Twelvestring60
    Twelvestring60 Member Posts: 65
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    NancyHB,

    You are so right! Everyone is different and you can have a close diagnosis to another person and yet, as you said crap shoot. I am new to site and have been in crazytown forum. You do the best you can. I have been looking around, reading and posting. Asking questions, laughing, crying, worrying with everyone. Be happy in this moment... yea...

    Dorene

    Oncotype score 31.

  • Twelvestring60
    Twelvestring60 Member Posts: 65
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    Hey everyone,


    I was reading all your posts.

    I did not see a lot of the oncotype scores as you received.

    They gave me a print out with circles on it with percentage of distant recurrance,(15%) and how much chemo would help. She made a graph and explained. Onc. didnt like score of that or the general oncotype dx score of 31. Never saw a ki67 or something like that. I found you all from looking up er+ pr- her2-. Just found out day before chemo the pr- part. And instead of 5 years or examestane it's ten. Where do you look up get the deeper information on his test? I read about heterogeneous tumors. She said yes it makes for changing diagnosis. I thought early diagnosis was .. you are all so informative. Thank you for sharing your stories. As tough as it is, you're living life , seeing beautiful things and kicking butt.

    Thank you for sharing. You've helped me just by putting your lives. Flowers, beauty, family, love.

    Peace,

    Dorene


  • ZEKE
    ZEKE Member Posts: 59
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    Hi Twelevestring,

    I had 3 biopsies done prior to surgery and they were 70% ER Positive 40% PR Positive and HER2 Negative.  My tumor was 0.7 cm very small so she did not want to do a mastectomy. She did a lumpectomy. She sent out the tumor to ONCO and 4 weeks later the test came back with an ONCO score of 41  without chemo I would have a 70% chance of the cancer not coming back and with the chemo it bumps up 15% to an 85% chance of the cancer not coming back. Obvioulsy there was a discrepancy with the tests or where they too the biopsies it was really positive in that area of the tumor.

    None the less I am not going to do Chemotherapy. I started full breast radiation instead.

    I have been trying to search for people who have decided not to go with chemo with triple negative to see their results but so far there are so many posts on here I cant find out where to look for them!

    Zeke

  • ZEKE
    ZEKE Member Posts: 59
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    Sorry I forgot to tell you that not only did the ONCO score come back 41 it came back as a triple negative also.  The ER was at 6.5 right on the boarder of positive. So my Oncologist felt that the hormone therapy probably would not work.

    Of course they recommended chemo - they all do.  It was my personal choice not to have it.

  • nancyhb
    nancyhb Member Posts: 235
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    ZEKE - I'm so sorry to hear about the high score. That must have come as a huge surprise to you and your oncologist. You'll see from my previous email that my pathology (which is done on a very small piece of the tumor, sort of a “point in time" piece) was originally ER/PR+ and Her2-, and my Oncotype test (42) came back ER+ at 6.6, PR- and Her2-. (We might be twins). Even that's tiny bit of ER kept me from being Triple negative. However - my treatment plan would have been the same had I been diagnosed TN from the get-go, or with the Oncotype score i received.

    Is your oncologist recommending Tamoxifen or an AI after your radiation? Even with my borderline score I tried Tamoxifen for a few months, then Aromasin, then quit at eight months.

  • Twelvestring60
    Twelvestring60 Member Posts: 65
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    Thank you guys.. so much for all you information. I guess you do your best to make sure we're all doing the right thing . Seems each person is different but it definitely seems like a lot of twists and turns with the final out come from a biopsy as opposed to the final tumor surgery. Heterogeneous... I wonder how oncotype dx does the testing.. as far as well, looking at whole tumor. Is there a nucleus they go right to? I have a lot more question now that to me, pretty drastic changes.. Port, no port. Equivocal, borderline, positive, negative. Caught early yet high recurrance.. again thank you all for information. If anyone would like to know some answers/ opinion of my onc. When I see her in a few weeks, please let me know. Or, any curious questions you have. She's knows I'm making a list.. ;)

    Dorene

    Oncotype 31

  • alicebastable
    alicebastable Member Posts: 1,939
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    It is certainly NOT true that "they all [recommend chemo]." It is only recommended to those with a high enough oncotype or mammaprint score that indicates chemo would be the best attack, OR for certain types of hormone negative tumors for which hormone blockers would be ineffective. Spreading misinformation does not help anyone.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Nancy HB

    No my oncologist feels that since my ER came back borderline on the onco score at 6.3 he said there would be no benefit for hormone therapy

  • nancyhb
    nancyhb Member Posts: 235
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    ZEKE - You mentioned earlier you were looking for posts here of those with TN cancer who decided not to do chemo. You won’t find many, if any at all. TN is aggressive, and chemo is the only option in our arsenal (as your oncologist pointed out, Tamoxifen is pointless, as would be other AIs). Even then some opt to skip chemo, for a variety of reasons. It’s still your choice. I encourage you to make sure it’s a thoughtful, well-educated choice so you have no regrets at any time, ever.
  • ZEKE
    ZEKE Member Posts: 59
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    Will do!

  • edwards750
    edwards750 Member Posts: 1,568
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    I thought a TN DX meant chemo and/or radiation were the only effective treatments. Tamoxifen and the like won’t work.

    Diane


  • Rissy973
    Rissy973 Member Posts: 7
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    I just rcvd my onkotype score of 40 and my surgeon recommended chemo (seeing the oncologist on May 8th). I had a 1st surgery in March that removed my IDC but uncovered widespread DCIS. I’ve had a 2nd lumpectomy on Friday and will find out if my margins are clean or if a mastectomy will be in order (surgeon doesn’t want to take out anymore tissue). I was preparing myself for chemo as I’d been warned it often comes with my ER + receptor. But seeing 40 has really hit me hard. I’m 41 with two small kids. I want to be as aggressive as possible.

  • Lyndalysa
    Lyndalysa Member Posts: 4
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    I’m new here and so I spend most of my time researching topic on breast cancer. Do you mind if I ask what your grade 2 Mitotic Score was? Thank you in advance.

  • wanderweg
    wanderweg Member Posts: 487
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    Rissy - 40 suggests a pretty aggressive cancer. There are no guarantees, but I had the same thought that you did about going ahead with chemo to give me my best shot. How did the lumpectomy go?

  • ts542001
    ts542001 Member Posts: 36
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    just want to thank you for a very informative post on oncotype score. i am waiting for mine to come back, hopefully today or tomorrow. very worried cause even though er/pr positive very poorly differentiated tumor. also there is some LVI and a micro met to SLN so it is good to know that they consider invasion too in their scoring.

    going to call my SO's office today to find out if oncotype is back yet.

  • beep7bop
    beep7bop Member Posts: 45
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    just testing

  • beep7bop
    beep7bop Member Posts: 45
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    wanted to check and see if my DX came up,. Something came up but it has somewhat changed, I have invasive mammary carcinoma which I think is the same as infiltrating. I am on AL1 mg and #Vit D3 50,000 u

  • beep7bop
    beep7bop Member Posts: 45
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    I had double mx, I had more than one cancer in left than they thought and I had even more in Right that they hadn't seen  in mammogram. invasive mammary carcinoma both breast  I had a 3mm, 6mm, 1.3 cm, 8mm and 5mm mixed ILC/IDC. I just lucked out and made the right choice for me when it came to surgery. They are all small but doctors were surprised. I am still stage 1 

  • scrafgal
    scrafgal Member Posts: 412
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    For those of you who seek some comfort after a devastatingly high oncotype score, check out a thread on this forum: "Long term "high oncotype test" survivors" Just use the search bar to find it.

    My score: 46.....and I was devastated at first. Reading that thread helped me understand that I was not alone. Also, last month, my oncologist told me that I was doing just great! I reminded him of my oncotype score and that I would forever feel vulnerable. Then he reminded me that the point of the onco test is to guide the decision about the effectiveness of chemo and or hormone therapy. After doing treatment, the 46 no longer really applies because I had done treatments to reduce the risk of occurrence. I felt much better not being weighted down by that 46 number. It means nothing now. I am approaching 2 years post chemo and have been doing well on tamoxifen. No guarantees, I know, but we must work hard to win the battlefield of the mind where cancer places us.

    Wishing the best for everyone!

  • peregrinelady
    peregrinelady Member Posts: 416
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    Good point. My Oncotype was low which guided the decision for no chemo, but my BCI said high chance of late recurrence.
  • Arya44
    Arya44 Member Posts: 30
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    Hello,

    I was told I needed chemo because of high grade, size and lymphovascular invasion. I asked for the oncotype test, which they initially told me was irrelevant! and waited on the chemo until the results were in. The oncotype score came back at 10! Only 3% chance of recurrence in 9 years, and less than 1% benefit of chemo. MO says its extremely rare for high grade tumor to have low oncotype score, I've been doing a happy dance and consider myself lucky. I had already bought a wig and was prepared for chemo. I was given tamoxafin rx and go back for a checkup in 3 months.

    Perigrinela, what is BCI? How late is the recurrence rate-after 5 years?

  • peregrinelady
    peregrinelady Member Posts: 416
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    Hi Snowflake, BCI is the Breast Cancer Index test that is usually given after 5 years of an antihormonal to see if there is any benefit of continuing for another 5 years. My oncologist gave it to me shortly after diagnosis just because I asked about it. It threw me for a loop since I had just received the low Oncotype, but since then I have realized that they look at 2 different things. Oncotype to see if someone benefits from chemo and BCI to see if extended hormonal therapy is beneficial.
  • herb
    herb Member Posts: 58
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    hi snowflake , her is what the bci test says about recurrence....Greater than 50% of recurrences in estrogen receptor-positive (ER+) breast cancer occur after 5 years of adjuvant endocrine therapy. Biomarkers capable of improving the risk-benefit of extended adjuvant endocrine therapy for these late recurrences would be clinically valuable. We compared the prognostic ability of the Breast Cancer Index (BCI), Oncotype DX Recurrence Score (RS) and IHC4 for both early and late recurrence among patients with ER+, node negative (N0) disease within the ATAC clinical trial.


    you can read whole trial here... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3918681/


  • Amyadipose
    Amyadipose Member Posts: 13
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    I'm still going through this struggle