Bone scan after reconstruction

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  • JMouse
    JMouse Member Posts: 78
    edited September 2019

    pesky904, I hope things go well at orthopedic oncology. I really hope you don't need hip surgery, but I hope even more it's not the monster come back. You've been on such a roller coaster with your doctors over this issue, on top of all the cancer treatment.

    Seems like an awfully strange coincidence if I have a rare benign bone tumor and breast cancer. But who knows.

    I've been assured the tumors on my spine are coincidental and just *look* like mets. Sure, why not.

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  • pesky904
    pesky904 Member Posts: 402
    edited September 2019

    Thanks, me too! I think from going to the gym and trying to get stronger, I may have a small tear in my right hip adductor muscle too, because I am in so much pain now on the right side I can barely walk. It coincidentally started right after my brain MRI last week, so at first I thought it might be a side effect of the contrast dye, but it's gotten worse since and definitely feels like muscle, not bone. But hoping the ortho onc can look at that too since the whole area from my mid back to my hips is just a problem.

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  • pesky904
    pesky904 Member Posts: 402
    edited September 2019

    I'm so extremely frustrated. I drove an hour and a half to the orthopedic oncologist (who is in the same network as my oncologist and I was specifically referred to this specific person by my oncologist). When I get there, the ortho onc tells me he can read the reports but has NO access to the actual images of my previous bone scans, PET scan or MRIs. So basically I went all the way in there for nothing because he was unable to look at the lesion.

    He told me that my oncologist can burn my images to a CD and FedEx them to him, but he warned me that 9 times out of 10, those CDs never find their way to him and I should either pick up a CD myself and drive it all the way back in to him (which is impossible - I had to get a ride to the appointment and I am not asking someone to drive that far just to drop off a CD).

    I called my oncologist and told them I need a CD sent and I need them to give me the FedEx tracking number. I still have not heard back from them. I also called the imaging department directly and left the same message - no call back from them either.

    He was also floored that they had never done just a plain x-ray of the area since in his opinion that's the first thing that should have been done. So he sent me for x-rays on my way out of the building.

    I just saw that he updated his notes. Based on only the plain x-rays, he suggested possibly fibrous dysplasia or liposclerosing myxofibrous tumor (which requires follow up because it can become malignant).

    Both of these, from what I've read, have very typical features on imaging, and the radiologists who did the bone scans, PET and MRI were clear that whatever this is does not have typical benign features.

    So now I have yet another "guess," but no answers. Previously, they guessed it might be a chondromyxoid fibroma. Prior to that, it was suggested it was a bone island, which I've since been told is impossible as it has the actual opposite features of a bone island.

    This is one of the top cancer institutes in the world and I am losing more and more faith in them with every interaction.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    So did he make a follow up appointment for after he has the images? What's the next step?

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  • pesky904
    pesky904 Member Posts: 402
    edited September 2019

    Nope. He left it MY responsibility to get him the images, even going so far as to tell me I have to call his office to confirm receipt because they get lost so often. And then said they would present my images at radiology conference once they receive them. I asked what happens to me from there, and he just repeated that first I need to get him the images.

    I have now left my oncologist a message requesting a CD of all my imaging (and a FedEx tracking number) and I've called the imaging department directly and left the same message. Have not heard back from either of office.

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  • pesky904
    pesky904 Member Posts: 402
    edited September 2019

    After about a million phone calls, I am finally getting my oncologist to send my imaging to the orthopedic oncologist. Their plan is to "present my images at radiology conference." No idea what that even means.

    The only other thing of note on my recent x-rays were "pseudoarticulations" of the spine. Don't know what those are. Oh, also "slight hypertrophic change of the lateral acetabulum."

    I did notice that the size of the lesion on plain x-ray was noted as 2.3 cm. The size on the MRI in May was 1.92 cm.

    Does anyone know if tumor size is different on X-ray than MRI due to the different views? I don't know if this means it's grown since May or not.

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  • pesky904
    pesky904 Member Posts: 402
    edited September 2019

    I still haven't heard back from the ortho but I did see that late yesterday he made an edit to my plain X-ray reports from 9/9 to say that he compared them to a CT scan I had at an outside facility on 6/27/2017 (a few days after I was diagnosed) and that the tumor on my femur "appears unchanged" compared to that scan.

    Well, it's two different modes of imaging, and I'm not surprised it hasn't grown substantially since then. I was on chemo for 22 months. If I had a tumor that continued to grow during all of that, it would have to be pretty aggressive.

    I have a feeling they are going to say they will just re-scan in six months or a year.

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  • Moomala
    Moomala Member Posts: 436
    edited October 2019

    I was just searching in the community for orthopedic oncologists and came across your thread here - hope you don't mind if I jump in.

    Alkaline phospate elevations can absolutely be a result of bone activity. Mine have been consistently elevated for many years as a result of Paget's Disease of the Bone. With Paget's, the areas of lesion are re-forming at an accelerated rate in which alk phos is a by-product, hence the elevation in the blood work.

    I share your frustration with orthopedic oncology. I have Paget's Disease of the bone (benign)and was dx earlier this year with bone mets after 24 years of remission from initial dx. I have a skeleton full of lesions, since 1995 with no bony pain (all my pain is disc/nerve/compression related) and my situation is that although I do have metastasis confirmed by bone biopsy this last spring, we really don't know how much of the widespread lesions are Paget's Disease and which are mets because Paget's mimics metastasis on most imagining. It's easier on nuclear bone scan but not always specific.

    This makes me question the viewing of progression on my skeleton as always metastatic. Maybe it's Paget's. Or maybe it's metastatic. I mean I'm metastatic so I'm stage 4 but do we change treatments with what looks like progression? Or do we biopsy every single time? I have an orthopedic oncologist but I could not feel more like a factory cog than I do with her. I'm in. I'm out. Five hundred bucks later I did not get a single answer from her. I was thinking of looking out of state for someone really skilled becuase apparently Paget's Disease of bone concurrent with bone metastasis is rare, but maybe that's a waste of my time.

    I also share your worry about finances. DH and I are both self-employed and that makes things really hard with insurance and deductibles and missed work.

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