Refused Onco DX

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GreenEyes81
GreenEyes81 Member Posts: 389
edited March 2019 in Just Diagnosed With a Recurrence or Metastasis

I am so FRUSTRATED!!! Been waiting a week and half for the onco dx to come back. I had got to the point that would by confirmation no chemo would be ok. Just found out tonight that the onco dx company denided the request. Said that because is was a "recurrence" the test would not provide any "valuable" information. Really?!?!?!?!

Not sure if accurate, but I felt if it was "low" or the same as the first time it would confirm it was the same cancer and not a new one. FLIP!!! End of rant.

Meet with MO in the morning....guessing we will move forward with rads.

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

    I am suprised, I wonder why a recurrence wouldn't be something they would test.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited March 2019

    I don't understand, I had a recurrence of invasive lobular and had surgery in Jan 2019. My breast surgeon sent a sample to OncotypeDX. Got result from my doctor two weeks later. My score was 21, but since I had no node involvement and I am post menopausal, no chemo. My first time was in 2003, invasive ductal. OncotypeDX wasn't available then.

    I would call the doctor who submitted the sample and get more information.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2019

    There are no set standards or studies for local recurrences, so doctors don’t have a lot of guidance. Multiple opinions are helpful, and always ask why they are recommended the treatments, tests, etc. Their reasoning can help you make your decision

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  • Celebris466
    Celebris466 Member Posts: 107
    edited March 2019

    Mavericksmom, Are you going to take an AI. I was diagnoses with IDC, HR/PR+, Her2-, no spread and no node involvement. My Oncotype was 13 so no chemo. I feel like a recurrence no matter what the Oncotype would warrant chemo, but stick with my Oncologists advice and no Chemo. I feel Like Chemo would get rid of any cells better than the AI getting rid of Estrogen. Thoughts?


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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited March 2019

    Meow13Mavericksmom part of my issue is my "recurrence" was first felt 7 months later, after a mx with no recon.

    I actually ended up getting the oncodx on my recurrence. I got a 2nd opinion and that doctor processed it as a "new" cancer where as the orginal doctor who also handled the first 3 tumors marked it as "missed cells".

    The score came back low again, but it didn't really give me any answers. No one knows if it was a missed cell that grew in 8 months (which indicate agressive even though the other tests said otherwise) to be felt...or if it was just a new tumor all together that didn't show in the first place-which again would have been 4 tumors in one breast. I am in a gray area....with 4 hospitals consulting, some even recommending chemo regardless of oncodx...the only thing anyone agreed on was strong follow ups and radiation. Take this, family history, age, 4 tumors, my body rejecting tamoxifen so badly I can not even switch to AI's and being over weight....I was told I was at an extream high risk, higher than the typical patient with bc. So I am getting scans every six months and manual exams every 2-3 months until further notice.

    KBeee said it perfectly....when you move into the world of recurrance its even more a "best guess" scenario. I was blessed I had a doctor that said to listen to my gut. It gave me the best chance of peace which is way more important now.

    All in all....I have peace. Moving forward, living life for today and getting back to being as healthy as possible. I will be ready for the battle should it come back again. There is nothing like being prepared rather than surprised!

    Celebris466 AI's and chemo work differently--same end goal but don't work the same on the deeper level. Also...chemo has serious side effects and possible long term problems that could be worse than finding a lump of cancer. None of it is a garuentee either way anyways. So find the best plan that you can have peace with, do it and move on. Don't get caught help up with the what if's today and miss out on living for tomorrow.

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