Don’t know if i’m really diagnosed or not

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Snaffle53
Snaffle53 Member Posts: 140
edited August 2019 in Diagnosed and Waiting for Test Results

My first test was a lymph node biopsy that came back positive for cancer ( likely breast cancer). Since then, both mammogram and breast MRI were negative. PET scan negative for major organs. But highlighted enlarged chest lymph nodes. Those nodes have been biopsied. No results yet.

And even before these latest results are in, my Oncologist is referring me to Dana-Farber. So now I’m waiting on that too. I’m not sure which day the referral was made. But my husband is already pushing to call Dana Farber tomorrow and check on status and/or speed things up. I’m not doing so great with all this waiting. But I don’t know if we should be hounding DF already. I’m anxious enough without my husband pushing things to move along.

I don’t know that I really have a diagnosis yet other than at least one cancerous lymph node. The not knowing is brutal. This has to be the worst time in the progression of getting diagnosed and starting treatment. I’ve about run out of patience. I’ve been needing something to help me sleep for a week.

How long does this phase go on? Will Dana Farber give us a definitive answer and diagnosis? How long is that likely to take?

I’m slowly going crazy here

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  • jessie123
    jessie123 Member Posts: 532
    edited August 2019

    You are going through such a horrible experience - Sometimes it doesn't hurt to push a little. Yes, I would call Dana Farber and I'd also want to talk to the pathologist at your current hospital to find out more about why they are saying "probably breast cancer" He/she should be able to tell you why they are not sure. When I had my biopsy they couldn't give me all the needed information about my tumor because the sample was too small. Hope you get answers soon.

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  • WC3
    WC3 Member Posts: 1,540
    edited August 2019

    Snaffle53:

    Sorry you've had to join us.

    With cancer, sometimes the primary tumor remains microscopic or disappears on it's own and only lymph node invasion or distant metastasis remains. Sometimes they can't even identify where the cancer originated. In that situation it's called "cancer of unknown primary".


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  • GlobalGal
    GlobalGal Member Posts: 63
    edited August 2019

    Dear Snaffle53,

    I am one of those patients with breast cancer mets found in my neck central lymph nodes following a thyroidectomy.

    However, no primary breast cancer tumor was found despite extensive diagnostic tests, including Pet scan, MRI-guided breast biopsy, breast MRI, breast sonograms, and 12 years of annual mammograms.

    My treatment currently consists of an anti-estrogen medication, Anastrozole.

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  • Snaffle53
    Snaffle53 Member Posts: 140
    edited August 2019

    My Bronchoscopy biopsy results were negative for cancer. So we’re just looking at the cancerous lymph node in my arm pit. One node was tested. But there are at least two enlarged.

    I heard from Dana Farber today with an appointment in 2 weeks. My local Oncologist is not happy with that delay. She’s going to call Dana Farber and try to move things along more quickly.

    Today was a very stressful day waiting on results and hoping to hear from Dana Farber. I’m completely wasted. Stress is exhausting

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2019

    Snaffle, I’m sorry, and how confusing. It is bad enough to have humdrum every day easy to diagnose stuff. Being rare is no fun.

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