Oncotype poll: Recurrence or new primary?

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Hi, ladies. Just jumping in to say that in 2007 I had an Oncotype of 18, lump/rads, chemo, Zometa, Tamoxifen 10 year plan. Just diagnosed with local recurrence (from biopsy appears to be same tumor type originating out of tumor bed) and am waiting on dr appts to determine treatment plan.

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Hi, ladies. Just jumping in to say that in 2007 I had an Oncotype of 18, lump/rads, chemo, Zometa, Tamoxifen 10 year plan. Just diagnosed with local recurrence (from biopsy appears to be same tumor type originating out of tumor bed) and am waiting on dr appts to determine treatment plan.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015
    Dear Nash - so sorry to hear about the recurrence. It is so very frustrating and frightening that a woman can do EVERYTHING and yet experience recurrence. It seems so random and inexplicable.
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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Thanks, Hopeful8201. Yes, it is frustrating, and I don't have a good handle on just how serious my recurrence is from reading up on it. The research is conflicting as to what a local recurrence such as this means, which makes one wonder if one's medical team has a clue or if they are just throwing stuff at us and seeing what sticks. I recurred while on Tamoxifen, which really kind of pisses me off.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015
    I'll bet!
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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2015

    i have oncodx of 34 no reoccurrence after 3.5 years no chemo just hormone therapy.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited May 2015

    Nash - I am so sorry to hear that you have been diagnosed with a local recurrence. That is my deep seated fear. I was to have a yearly MRI today but came down with a very nasty cold (and cough) and had to cancel it. So much anxiety wells up in me before this yearly MRI that I just wanted to get it over with. At least everyone here so understands all of your disappointment and anger that after all you have done, you still had a recurrence. Makes no sense, it is so random. Do you know your treatment plan yet? Good thoughts........

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Hi, Barbara. I actually just got home from the surgeon. I see my onc in the morning. B/c the recurrence was found as an incidental finding on MRI and appears to be 1cm or smaller, the surgeon thinks I won't need more chemo. Phew. I will have to have my ovaries shut down and go on an AI, and I will have to have a mastectomy. Surgeon will rerun Oncotype on the recurrence, and will be taking more lymph nodes. I have to get rescanned, and if things have metastasized, then no surgery and back on chemo. But overall the surgeon didn't think the risk of mets was highly elevated or that this recurrence impacts overall survival. I'll see what the onc says tomorrow and will let you know.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    Dear Nash - I hope your bs is right about the chemo, the risk of metastasis and the overall impact on your outlook. I'm keeping my fingers crossed for you. Sorry about the mastectomy, though. I'm sure it's tough to be facing that, for a variety of reasons. Thanks for keeping us posted.

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Thx, yeah, not thrilled about the mast at all, and have to decide about recon, but oh well. I wasn't ready to go through all that in 2007 and figured if I was pushed into it medically speaking down the road I'd deal with it them. And voila, here I am. Will check back in tomorrow with onc report.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited May 2015

    Nash - Thank you so much for checking in with the latest news. It always seems we have to choose from options that no one wants to choose. So many consequences with all the different choices. That rattled me when I realized I had to make decisions and not all the docs agreed.

    I have a friend that was diagnosed a year after I was, had a mastectomy and implants. She is very happy with the end result however she is my age and being in your 70's puts a different spin on what is acceptable. But it is, I'm sure, a very hard choice to make and I am sorry you find yourself in this situation. It all sucks, no matter the age or how you look at it.

    Please know I will be thinking of you tomorrow and wishing you the best.

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Onc is suggesting TCx4, but wants to see Oncotype on tumor first. Surgeon said this tumor is a recurrence of the first; onc says it could be a new primary. But I don't think it is, b/c it's in the same spot as the first tumor. Both surgeon and onc say ovarian ablation/AI.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    In your shoes I know I would want to see the Oncotype, but that's just me...

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  • nash
    nash Member Posts: 2,600
    edited May 2015

    Me too

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited May 2015

    In my experience, there were two oncs that suggested chemo as well as my breast surgeon. Finally the second onc ordered the oncotype but by then I was so convinced I needed chemo that when he told me my score and he had now changed his mind.........I actually fought his decision. I told him I needed a week to think about it, but within 24 hours I was happy he had made a different choice than originally. Fortunately I was not in the grey area so it was easier for me than many ladies.

    Please share your score and know that we understand how hard the waiting is. Good thoughts

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  • dixiebell
    dixiebell Member Posts: 280
    edited May 2015


    I had an oncotype of 5. Mets to spine 3 years later.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2015

    OMG Dixiebell that really sucks! My score was 11. I guess we all know nothing is set in stone and zero guarantees no matter what stage your tumor is but I would have felt a bit confident with a score that low.

    I just had my annual mammogram last week. 3 1/2 years out. All clear. Needless to say relieved but def not overly optimistic esp reading about your situation. I have accepted this is a lifelong battle. Once you are branded with the C word it sticks.

    Really sorry.

    Diane

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited May 2015

    Dixie - I hardly know what to say. I have always hoped that the oncotype would prove to be kind of reliable, now I have other thoughts. I am so sorry to hear that such a low score made no difference and that now you are dealing with mets. What protocol have they set up for you? Wishing you little to no side effects from whatever they have decided is best. How random cancer is; I feel like EVERYTHING they tell you is just a stab in the dark. I will keep you in my thoughts.

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  • Cloudygarden
    Cloudygarden Member Posts: 10
    edited June 2015

    I had a score of 19. This was a third local reoccurrence in breast 1999, 2000, 2013. Surgeon and medical oncologist recommended not to give chemotherapy. I have had invasive breast cancer in both breast ductal & lobular. Opted for a bilateral mastectomy and am on Aromasin (previously on Tamoxifen, Femara). So far doing well but worried

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear Cloudygarden, Welcome to you and thank you for posting your story within our community. We are glad that you are doing well but here you that you are worried. We hope that you can gain support from others here who perhaps have walked similar paths. WE hope you stay connected, keep us posted and be well. The Mods

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited June 2015

    Hi Cloudygarden - I hope by now you have found information in BCO that helps you along your path. I am sorry to hear that this is the third time you have had to deal with cancer, daunting as it is the first time at diagnosis, it must be unbelievably hard to feel so out of control at this point. I imagine they have set up your treatments and I wish you strength to deal with what ever has been set in motion with few side effects. I will keep you in my prayers and hope you will return to let us know how you are doing. Sending good thoughts.

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