Possible metastasis?

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TDF
TDF Member Posts: 13
edited April 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi all, I'm hoping someone can help shed light on whether I should be concerned. I was diagnosed in 2006 with invasive lobular at lumpectomy. Had a right mastectomy with sentinel node biopsy but there was a problem with the frozen section so they never tested the lymph nodes they took out. Had dose dense chemo with Adriamycin and Cytoxan, followed by Tamoxifen that I took for maybe 3 years, and I've been on regular follow up with my oncologist since (though I did switch to a new oncologist when I moved about 5 years ago).

In the past year, my calcium levels have gone up and now hover regularly just below or above the abnormal level. I also have arthritis but my bone pain has gone up in the past year, and not centered around joints as usual. I've also been having occasional night sweats at random. Looking over my past 3 blood test results, spanning 5 months, my WBC, hemoglobin, hematocrit, platelet levels are all decreasing steadily. I've also lost about 20 lbs over that time without trying to, with no change in diet or exercise to explain it.

PET scan about a year ago was negative. My oncologist has been thinking of doing a bone marrow biopsy if my calcium goes abnormal again.

I saw my oncologist about 2 weeks ago and scheduled another follow up in 4 months. Last week, I got a call from them - the nurse said my oncologist "is worried about some test results and wants to see me within the month to discuss 'things'". So I'm scheduled to see him a week from today. I stopped by the office to pick up a copy of the results in question - calcium high but just within normal range, and I see that he had them run a new test for me, a circulating tumor cells test. The results are 1.

My oncologist isn't an alarmist, and they've never called me in earlier than scheduled before. So my question is, what has him so worried? Does this circulating tumor cells test mean my cancer has metastasized to my bones and blood? I'm kind of freaking out and would appreciate any info anyone cares to share with me. Thanks so much in advance.

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

    Circulating tumor tests are new, and not used a lot of places. The good news is that your MO seems to be really on top of things and not willing to wait. This means you'll have answers soon. Hopefully the answer will be something completely benign. Sorry you have this added stress. Keep us posted.

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  • pajim
    pajim Member Posts: 2,785
    edited April 2016

    I don't know what the threshhold for the CTC is, but 1 doesn't seem very high if that's a score.

    From what you describe, something is going on. Losing 20 pounds without trying, coupled with the abnormal blood counts, is not normal.

    But it doesn't sound at all like mets. Mets cause pain, shortness of breath, jaundice, etc., depending on the location.

    Glad your onc is trying to get to the bottom of it.

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