confused and petrified with fear

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elise24601
elise24601 Member Posts: 155
edited November 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

I was diagnosed in May as stage III. Finished chemo - was told I responded well - and was scheduled for my double mx with recon tomorrow.

Last week I had port removal and a biopsy under the nipple to see if they could save it, as well as on the sentinel nodes to see if they needed to take auxiliary ones.

This AM the breast surgeon calls and CANCELS my mx. The reason? According to pathology, 4 of the 6 nodes had cancer, and the nipple did too, so she is now suspicious of distant mets (!) and wants me to have a PET scan on friday. Surgery is now on hold pending those results.

I am sick with shock and fear. My post-chemo breast MRI and nodal ultrasound were clear, as were my blood markers, so I am super confused as to why there is suddenly so much cancer, and serious enough that she is worried about stage four mets!!! I don't understand if this means chemo didn't actually work, or if it did but then the cancer grew back really fast, or what happened. Honestly it doesn't make sense to me. It feels like they mixed up my path report with someone else's. Unless it is typical for MRIs and US to be clear when there is still lots of cancer present? How does that work?

I will be speaking to my oncologist tomorrow. In the meantime I am a mess, haven't eaten all day, shaking and crying. I thought I was moving forward with treatment to put this behind me, and then this comes out of nowhere.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    Oh my goodness, you must be very upset. I am so sorry and also confused for you. I would think that a sentinel node biopsy would have been done before chemo and after initial mri confirmation.

    My mri showed exactly what they found with surgery. I like you was er+ pr-, but I also had an ilc tumor.

    I pray that the pathology was incorrect, having a pet scan should help get to the bottom of this. Wishing you some peace of mind tomorrow.


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  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    That sounds like a huge discrepancy and I would ask for clarification and perhaps another opinion. You would like to think they would not mix up results, but it does happen.

    Keep us posted

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  • Toscaxoxo
    Toscaxoxo Member Posts: 18
    edited November 2016

    Dear elise24601,

    I am Stage 3 and (for now, almost two years out) doing really well, so maybe my story can help you.

    My case was nasty and they wanted a PET scan before surgery for me also. I assumed the worst, but it was normal, so yours has a good chance of being normal too. I am rooting for you!



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  • Emily2008
    Emily2008 Member Posts: 605
    edited November 2016

    Major hugs, Elise. I had an awful, anxiety-filled day, too.

    I will pray you will get some answers that fill in the gaps for you.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    I have my mri tomorrow too. Let us know what the results are.

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  • gracie22
    gracie22 Member Posts: 229
    edited November 2016

    Just try and hold on. If the nodes looked clear on the scans, chances are that the amount of cancer in them was pretty minimal. Is the PET tomorrow or a week from tomorrow? if it's a week away, see if your doc can get it moved up as it would be much better to just get it done and go from there.Things will fall into place. Can you bring someone to the appointment tomorrow? I am sorry you are going through this; the waiting is brutal.

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  • elise24601
    elise24601 Member Posts: 155
    edited November 2016

    Thanks everyone. The scan is tomorrow, my mom is going with me. I'm sure I can get through the actual procedure, but I know I will fall apart waiting to hear the results.

    So far on my cancer journey everything has been bad news - first I got the cancer dx at age 31, then we find out there are 3 masses and it is grade 3 and in the nodes, then I find out I am BRCA1 positive, then just now learning chemo may not have worked after all because there is residual cancer…at this point I expect to be unlucky and doomed! I just want positive news for once.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    elise, I felt like everytime I went to the doctors I got bad news but it was the MRI that I got my first good news.

    I was the last patient of the day and I was breaking down crying. So the doctor came out to talk with me. He told me he had beaten cancer twice. He did first an MRI of my whole body core all of my organs plus the breast MRI. The surgeon wanted as much info as possible since my bilirubin was high. I was in the machine a total of 40 minutes. After it was over the doctor came out and told me his findings. It was like music, beautiful he said such a healthy body and only 2 small tumors in my left breast. Everything else clean as a whistle. I almost forgot about the cancer I was so happy. He was texting the whole time to my surgeon.

    I told him I love the MRI machine. I hope I feel that way tomorrow. My chiropractor said he would make sure I get the results by the end of the day.

    Good luck to you. I'll be thinking about you.

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