Possible Bone Mets and Bone Scan Accuracy

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TDF
TDF Member Posts: 13
edited October 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Originally diagnosed with Stage IIA ILC with tubulolobular characteristics, had mastectomy and dose-dense chemotherapy with AC. 4 years later, rapid growing mass in uterus prompted total hysterectomy - pathology said it was 'pre-cancerous' and gynecology oncologist said chemo wasn't necessary since it was all taken out.

While hospitalized 2 weeks ago for stomach virus, blood tests showed I had high calcium and was anemic. Admitting doc and my primary both said I needed to see an oncologist ASAP because I've also been having severe hip pain waking me up at night whether I'm lying on that hip or not, night sweats, and occasional sudden weakness in my legs.

Oncologist is concerned about possible bone metastasis and ordered a bone scan, CT scans, mammogram and blood tests (including for tumor markers).

The radiology nurse for the bone scan (just yesterday) showed me my scan and said it didn't look like metastasis immediately so I was probably okay. However, to me, it looked like parts of my pelvis on each side were brighter than the rest, as we're my shoulder blades. She said it was probably just mild uptake for arthritis. I have arthritis, I know what arthritis pain feels like - this hip pain is NOT like arthritis pain. It's so painful I wake up ready to cry and afraid to move, and while it eases during the day, it doesn't go away.

My question is how accurate are bone scans? Are false negatives possible? I'm wondering if I should ask the oncologist for a PET scan or a bone biopsy. When I originally had the mammogram and sonogram that found the masses in my breast, they appeared benign to the radiologist ("we're 99.9% sure you could just leave them alone if you don't want a biopsy") and in actuality were not only malignant but invasive. So I'm a little headshy of radiologists and false negatives. I'm just really worried, feel "off" from my usual joint pains and aches, and want to know definitively if it is or isn't bone metastasis. Anyone ever experienced anything similar?

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited October 2014

    I was stage IV from the get go but I do believe that you are correct in your suspicions.  I believe that a bone scan will not tell if those brighter areas are cancer or not.  I think you do need a PET scan and a bone biopsy.  I would request more testing to be certain. I think it is important to find out as soon as possible. 

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited October 2014

    Usually a radiologist can tell if the areas that light up are cancer or not.

    I have arthritis in my hips and degenerative disk in my spine and when I have had bone scans,the report will state, consistent with arthritis or degenerative in nature .

    It is a little strange that the nurse is reading the scan. I assume a radiologist is also going to?  I would wait for the report and see what they say. If they can't tell for certain, they will usually state that further testing is reccomended.

    Laurie

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