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Information on decisions with Oncotype score

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ZEKE
ZEKE Member Posts: 59

I am interested in your decision and outcome based on a HIGH Oncotype score.

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  • peregrinelady
    peregrinelady Member Posts: 416
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    Since it is fairly slow here on weekends, you may get more info. from searching Oncotype in the search bar. There are several threads on this topic, especially for people who received intermediate scores. There is also good info. on the Oncotype website. I received a recurrence score of 12 so did not take chemo. Being over or under the age of 50 can factor into decision making after results of the TailorX study were published. Have you had the Oncotype done?
  • ZEKE
    ZEKE Member Posts: 59
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    I have been diagnosed with an RS Score of 41 with a distant recurrence rate risk at 9 years with Tam or AL of 29% with the chemo an additional 15%

    I had an invasive Ductal carcinoma that was 0.7 cm. 5 lymp nodes were removed with no cancer in them and clear margins from the tumor removal.

    Looking for peeps with similar RS score and decisions and outcome.

  • salamandra
    salamandra Member Posts: 745
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    Hey Zeke,

    Maybe edit your title and initial posts (I don't know if you have to contact the mods to change the title) - I bet you'll get more and better responses with more specific info. Maybe something like "Stage 1 high Oncotype decisions" or something.

  • rachelcarter35
    rachelcarter35 Member Posts: 256
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    I had a Oncotype score of 26 and had chemo. I made the decision before I got it to do chemo if it were 25 or higher so not to drive myself crazy. I finished chemo in August and am back to work, taking Tamoxifen and feeling good.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Rachael,

    Did you do radiation?  I am so confused about all of this. I had to go on the site here to get some results and feed back. My surgeon said she would not do a mastectomy on both breasts at all. She said that this has to do with the possibility of cells starting to form a tumor somewhere else in my body. My oncologist said who knows your tumor was removed and you had no cancer in your lymph nodes and that may be it you will never get cancer again and we got it.  Or you can go through 5 1/2 months of chemo - 3 weeks of radiation and then hormone therapy and it may turn out ok. Or you still may get cancer.  So he went from the left to the right.  I walked out of his office so confused. There is no guarantee at all on any of this.  I ponder do I want to go through all this misery for nothing. Possibly still getting cancer back anyway again.  I am looking forward to hearing from the people on this site that have gone through this - or made the decision not to have the chemo and how they are doing now. With a high Onco score.  It will be greatly appreciated! I am glad you are doing well Rachael!

  • rachelcarter35
    rachelcarter35 Member Posts: 256
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    I had a double mastectomy, clean margins and no node involvement. I had chemo and no radiation. I think my not getting radiations was because of the mastectomies and clear margins. I don't know why exactly.

    I got a second opinion before any of my treatment and went into it feeling like I was making the right decisions. I think some oncologists are better at explaining things than others. Maybe get a second opinion? That helped me a lot. Also just do the research. Ask lots of questions. My husband jokes that I went to cancer college. I did tons of research.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Rachael,

    Thank you. I am going to get a second opinion that's for sure! I am 61 years young and have a good life ahead of me. I think the reason this is so hard for me is that my tumor was sooo small only 0.7cm - It was not like I had to have mastectomies or had larger tumors or ones that were near my chest wall.  So to have to go through all of this it really hard for me to get a grip. Of why? Why do I need to go through all of this for such a small tumor.  I know my grade was 3. And my Onco 41.  I will keep you posted and do look forward to more feedback.  I am making an appointment with another oncologist on Monday!

    Thanks!


  • boston12
    boston12 Member Posts: 9
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    I had a bad experience with Oncotype because it was clear to everyone on the BC team except my MO that I needed chemo based on the pathology report. Waiting for the test results was one of the worst experiences of all. Knowing that I needed chemo and having to go through what ended up being a 5 week wait because I'm on Medicare (Medicare won't allow the tumor sample to be sent out for two full weeks after surgery) really brought me to the edge. The moderators don't like it when I say this, but the genomic tests can sometimes undermine a doctor's confidence in making a decision. It sounds like the results of your test has your doctor a bit flummoxed, given your pathology report. I'd get a second opinion unless your triple negative or Her+ in which case you shouldn't have had the test.

  • legomaster225
    legomaster225 Member Posts: 356
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    ZEKE, you can read my stats below but I had a score of 39. I did neoaduventent chemo, BMX and radiation. I did have a positive node at diagnosis that was clean at surgery. For this reason I completed the radiation although the tumor board had drs on both sides of that decision. Chemo was a given for me. Good luck with your decision, none of them are easy. Heart

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Boston12!

    Yes I agree he was flummoxed.  Which makes it very hard for me.  I am getting a second opinion.  I just looked at the Oncotype score report and at the bottom 

    it reads - 6.3 ER Negative

    3.5 PR Negative

    <7.6 HER2 Negative

    And I have no idea what any of that means!

  • MiCyn
    MiCyn Member Posts: 29
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    Hi Zeke..

    I had a score of 37. I had many discussions with all my Drs. I also went for 2nd opinion. I did choose to do chemo. I knew it was the right decision for me. There is one person that I know of (Meow13) who had high score, did not do chemo & is doing well several years out. She did her research, and offers alot of support to others on here. Waiting for test results, making decisions was tougher on me then going through treatments. Once I had a plan in place, I could relax a bit. Hang in there! Hugs, Cyn

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Legomaster2!

    I am humbled by everything you have been through and also very proud of you. I hope that the decision I make will be the right one.

    Thank you for your post!


  • ZEKE
    ZEKE Member Posts: 59
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    Hi MiCyn,

    Thank you I will try and find Meow13.  I know I will most likely feel better after a scond opinion.

  • murfy
    murfy Member Posts: 255
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    ZEKE: Your report indicates that you are triple negative, meaning your small tumor did not have estrogen or progesterone receptors and was also negative for HER2. It was small with no lymph involvement and that's good news! These tumors tend to be very aggressive, hence your grade 3 and high Oncotype score. These stats usually lead doc to recommend chemo. Even though your nodes were negative, these tumors can spread via blood vs lymph. You would not be a candidate for anti-hormone therapy. I sought 3 opinions and all recommended chemo for me with my high score. If your doc is flummoxed, perhaps a second opinion is in order. And a third, if you are still unsure. Best of luck.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Murfy,

    Thanks for your response!

    My oncologist said I was a canadate for hormone therapy due to those results. Strange.

    He did suggest Chemo. My surgeon said no to a mastectomy. I had a lumpectomy.

    This chemonwould be a preventative chemo. There are no guarantees. I have seen people on this site that had the chemo and got cancer a year later anyway. It really is a hard decisions to make because of this.

    If I had more severe tumors and speeding it would be a no brainer. But I am 62 not in the greatest of health to begin with and fear the chemo would

    Give me extremely bad side effects. I am also allergic to almost all antibiotics. So anything my body takes as medicine it rejects right away.

    I am getting a second opinion but my current MO says they will say the same thing due to the score. I was trying to find stats of people with this higher score that did not do the chemo to see how they are fairing but don’t know how to find that in here!



  • ZEKE
    ZEKE Member Posts: 59
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    one more thing did you ask for a full masctomy with that small of a tumor? My surgeon said only a lumpectomy for mine. Was that your decision

  • legomaster225
    legomaster225 Member Posts: 356
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    ER, PR results from the Oncotype score may be different than that of the initial hormone receptor testing. Someone on this board explains why once but I forgot. For example I was ER 23 and PR 10 on the hormone assay test but my Oncotype score said ER 5.6 PR 4.8. I am taking an antihormonal. Maybe someone else can explain why they measure differently.

  • murfy
    murfy Member Posts: 255
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    Interesting...perhaps your formal path report indicated you were weakly ER positive, as aromatase inhibitor may be helpful in that case. Mine was a 'preventative chemo' as well, as I had no apparent node involvement and no lympho-vascular invasion (LVI). However, that did not mean some cells hadn't escaped through the bloodstream, perhaps during the biopsy, and I, too, had an aggressive tumor. But aggressive tumors tend to be more responsive to chemo and that's a good thing.

    Your docs will take your health history into consideration before making recommendations. There are some chemos that are more mild than others and I took one of those. I demanded mastectomy because my entire breast was diseased in one way or another. Lumpectomy is often a preferred choice for a small tumor such as yours and much less invasive than mastectomy. Did you get a copy of your formal path report following your surgery? It would have a lot of good additional information regarding your type of tumor, LVI, and whether there were clear margins.

  • legomaster225
    legomaster225 Member Posts: 356
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  • meow13
    meow13 Member Posts: 1,363
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    zeke, I sent you a pm. I should mention I had a simple mastectomy I had 2 tumors close to the skin so no skin sparing. The pathology said no skin involved and cancer was confined to the 2 small tumors.

    My oncodx was 34, er 95% but pr 0% her2-, I didn't require radiation, I did 4 years on AI drugs. I am on year 8 no cancer. I had idc and ilc and both were 1cm, I believe the er and pr combination drove my score to high risk I will include a link on AI vs tamoxifen.

    https://www.cancernetwork.com/articles/anastrozole...


  • ZEKE
    ZEKE Member Posts: 59
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    Hi Meow13

    Thanks for your reply. My quanitive Single Gene Scores are

    6.3 ER Negative

    3.5 PR Negative

    Less than 7.6 HER2 Negative

    ER SP1 is Positive

    PR (1E2) Positive

    The doctor said I am receptive to hormone therapy.  I am going for another opinion, and God willing I make the right decision.  Thank you for still being on this site knwing you are doing wel for so long.  I am certain that most that are doing well move on and don't want to go on this site anylonger so we don't hear from all the people that have positive results.

  • wanderweg
    wanderweg Member Posts: 487
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    Hi Zeke, as you can see by the responses, there is no "right" path, just the path that works for you. My oncotype score was 38, and I was triple negative in their system, but 65% ER+ on pathology. I had a 1.2 cm tumor and had a BMX and was node negative. Because the oncotype indicated an aggressive cancer, I opted for chemo (on the advice of three different oncologists). I did four rounds of TC. Not fun, but tolerable. I was 55 when I started and also feel like I've got lots of good years ahead of me. I'm on tamoxifen now, for the cells that are ER+. Was it all worth it? Who knows. But I feel like I did absolutely everything I could so I'm comfortable with the decisions I've made. I wish you all the best as you struggle with what is the right choice for you.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Wanderweg

    Thanks for your reply. So you also had both breasts removed? Was that your decision or did the surgeon feel it was appropriate?

    When I went in my surgeon never suggested a full mastectomy to me only a lumpectomy but my tumor was 0.7 cm.

    Thanks


  • wanderweg
    wanderweg Member Posts: 487
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    I did the other side with my surgeon's consent - I had off-the-charts dense tissue and just felt like I didn't want to always feel like I was waiting for the other shoe to drop. Her preference is just doing the side with her cancer but her own mother also chose bilateral, so she said she understood my decision.

  • footloose
    footloose Member Posts: 25
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    Hi Zeke,

    Sorry I can't understand your HR results from posts 2/20/19. My Onco report didn't have such comments.

    I just wanted to say I've had DCIS multiple times treated with lumpectomy only and been fine until this latest new primary of IDC plus

    positive sentinel node. My Oncotype was 29 and I'm meeting a MO on Friday 22nd.

    The fact that your tumor was so small, all your nodes were negative and your margins were clear sure says you're good!! the Oncotype

    might be high but that's in reaction to the tumor itself which you've had removed. I understand your stress and anxiety but I would say you are in a good place. I'll ask my MO about the difference in Onco scores and will let you know if he imparts anything helpful.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Goofys46!

    Thanks for your reply! I am just a mess about making this decision. The fear my MO put in me is that the cancer could be forming somewhere else in your body. We just don’t know he said and because it’s a grade 3 and the onco came back 41 that means it’s an aggressive cancer so by doing chemo it’s a preventative measure but no guarantees. I said just what you did it’s so small and they removed it with clear margins! He said it does not matter about the size. he said think if it as an insurance policy.

    To me that’s an expensive policy with no guarantees. I have read posts on here with women who had the same diagnosis as me but with a lower onco score. They got 1 or both of their breasts removed had chemo and the cancer came back within a year. So everyone is different.

    Many women are fine and the cancer has not returned

    God bless all of us that has this terrible disease.

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    zeke...cance treatment, like life, comes with no guarantees. Is chemo poison? Some people look at it and believe so, while others believe it is their best shot at life. At the end of the day, it is for you to decide. With an Oncotype DX score of 41, you are looking at an aggressive tumor. While it is possible that surgery removed all of the cancer from your body, no one can say with certainty that it hasn’t traveled elsewhere.


    That said, you are fortunate that there is a genetic test available to guide your physician’s recommendation. A dozen years ago, without the help of genetic testing, most women were advised to receive chemo. Before genetic testing, doctors could only make generalized opinions about who didn’t need chemo, so they erred on the side of caution and advised most patients to get it. Today, that is no longer the case. They now know with the help of genetic testing who will LIKELY receive the most benefit from chemo and who will likely not benefit. With your score, and a Grade 3 tumor, chemo gives you the best shot at not revisiting this disease locally or advanced. Best shot does not mean definitely. It just means that with all of the evidence that physicians have with respect to cancer recurrences, chemo is advisable.


    There are some patients here that despite not being warranted will insist on chemo. And, there are some patients here that will never agree to have it despite it being warranted. Still there are some patients who still are in a gray area because despite all of the best evidence, there is not enough evidence to suggest either.


    Perhaps get a second opinion or have a hospital tumor board review your case. That might help you come to the best decision for YOU.

  • wanderweg
    wanderweg Member Posts: 487
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    Just an added thought, since our oncotype scores were similar (38 for me) and we both have very aggressive cancers - both my breast surgeon and my oncologist said that if I was a family member, they’d force me to get chemo. Both said it was absolutely my decision, but both also urged me to not skip it because the recurrence risk was so high without it

  • ZEKE
    ZEKE Member Posts: 59
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    Hi

    Thank you for your input and I totally understand where you are coming from. I am 62 years old. And will be getting a second opinion also. Plus my health now is not so great so I have to be very careful especially with the side effects to the heart

    May God bless all of us I prayed for everyone last night





  • meow13
    meow13 Member Posts: 1,363
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    Funny wanderweg, forcing someone to get chemo! That was more terrifying to me than anything, the worst possible thing that could happen in my opinion. If my cancer were to progress is actually less freightening than someone forcing me to do something against my will.

    I urge anyone to do the treatment YOU believe will help you. If you believe chemo is for you do it but don't be strong armed by anyone.