Contradicting scans

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melmcbee
melmcbee Member Posts: 1,119
edited February 2017 in Not Diagnosed With a Recurrence or Metastases but Concerned

In December I had a Ct chest and it showed sclerotic lesions in t-spine, so I did a mri of t-spine and it said it was likely metasteses. I then did a bone scan which showed no cancer. So I just assumed that I was ok. Well the mo wanted me to do a ct abd and pelvis so i finally got that done and it us 2 pages of lesions in my spine that some if them are benign bone islands but there are newer ones that the report says likely metastesis. I have also had a 30 pound weight loss. I have no idea if these lesions are big enough to biopsy but I know that doesnt sound fun. Has anybody had experience with contradicting scans. Has anybody lost weight due yo bone mets. Thanks in advance. I also posted this in the ILC forum.

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  • cive
    cive Member Posts: 709
    edited February 2017

    My first CT scan the radiologist said there were no osseous(bone) mets however on the second scan the radiologist said I had sclerotic mets through out my skeleton.  I think the difference is that the first radiologist did not consider the sclerotic (bone building rather than lesions) mets as notable.  My MO is treating me with Xgeva for bone mets.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited February 2017

    Oh thank you for replying. Did you have to have a biopsy or did your mo just put you on chemo for mets. Is this how you were diagnosed with mets

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  • Freya244117
    Freya244117 Member Posts: 603
    edited February 2017

    Mel, I also have ILC. I had a bone biopsy on L5, and it was a simple and painless procedure. I could feel a bit of pressure, but that was it.

    In my experience, ILC grows flat like a sheet rather than making a lump, making it harder to dx. I had bone pain for 3 months before it showed up on any scans. I now know new ones will show up on an MRI well before a bone scan in my case.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited February 2017

    Melanie,

    I'm in the same boat as you at the moment with conflicting reports, and am waiting for someone to decide what to do. CT back in May read by my local radiologist said nothing found, but UofM reported lytic lesions on L2 and L3 and sclerotic lesions on iliac crest and femoral neck. Another pre-surgical CT in July at UofM confirmed same, and indicated "evidence of metastatic disease". But the lesions were subcentimeter and my MO wanted to wait a couple of months and rescan for progression. CT in October, and my local radiologist says there's nothing there. Looooong backstory, but suffice it to say I called him for clarification on results and he indicated he didn't read the series back in May that had the original lesions / but confirmed they were there. 😡 When I asked how lytic lesions "disappear" between May and October he said he believes they were never really there to begin with and were an artifact of the machine. Except I've had a CT on two different machines - and so he says that sometimes lytic lesions will appear during chemo but disappear after (which my MO says isn't correct) (I finished chemo in June, BTW). So I had another CT and a bone scan (which my MO swears is the gold standard for detection of mets) at UofM this last Monday, and I'm just waiting for the results.

    My MO seems torn as to what's really there, and as you mentioned he we can't be certain without a biopsy. Because I've had both ER+ and TN cancers, I'd need a biopsy to determine whether I can use AIs, or have to go straight to rads/chemo.

    Unlike you, though, I haven't had much weight loss - about 10 pounds since the summer, but I upped my running and am trying to watch what I eat, so it hasn't been a concern. 30 pounds is quite a loss.

    I'll keep you on my thoughts!

    Nancy

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  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2017

    I understand that nuclear bone scans are the most accurate at detecting mets - is this still true for ILC mets?

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited February 2017

    Thank you ladies for responding. I feel calmer already.

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  • cive
    cive Member Posts: 709
    edited February 2017

    melmcbee:  I had already been diagnosed with lung mets which is why I was having regular CT scans.  I'm still not on chemo since I did the whole ball of wax (ACT) more than 10 years ago.  Just on Femara.  Xgeva is similar to medicines given for osteoporosis, not chemotherapy. 

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