Scared by scan results I wasn't told about.

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zucchini
zucchini Member Posts: 15
edited May 2021 in Not Diagnosed With a Recurrence or Metastases but Concerned

Last month, I had a lip droop and spent the weekend in the hospital. I had both a ct and mri and was told at the time (by the hospital staff neurologist/oncologist) I was all clear. No mets, no stroke. Probably a palsy or neuropathy. My oncologist scheduled a 2 month mri follow up. I didn't think much of it until I went to print up the reports for my records. The scan records indicate a lot I don't understand but it looks very concerning. They weren't all clear. There's a lung nodule. Several enhancements on the mri in the leptomeningeal area and choroid plexus. No masses detected. My tonsils are low. I'm just scared. Why would they say it was all good, then schedule a follow up, and never explain any of it to me?

I already called my nurse navigator who is forwarding it all to my oncologist and asking for the oncologist to call me and help me understand. I know nobody besides my team are qualified to really tell me what's going on. But I'm terrified and having a hard time coping.

I know nothing can change what's there or not there. I'm not even sure what I'm asking for here.

But any help or advice would be appreciated. Especially until I can hear from my oncologist.

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  • 1openheart
    1openheart Member Posts: 765
    edited April 2021

    I just wanted to say hello and let you know that someone will surely come along soon that can give you some insight into what those unknown words on your report may mean. I imagine that you felt your heart in your stomach as you started to read. I told someone else in an earlier post that I try my best not to worry about things that I can't change because that worry doesn't help anything and it is though I have lived through it happening even if it all turns out ok in the end. I hope that you get answers soon, hopefully tomorrow so you won't have to wait over the weekend. I find it helps to stay busy as I wait. Take care and sending calming energy to you.

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  • zucchini
    zucchini Member Posts: 15
    edited April 2021

    Thank you for the reply.


    I appreciate it so much. And you're right. Worrying won't help a thing. Thanks for your kind supportive words. And the calm.

    Just gotta be in the moment. That's all we really get anyway. ❤

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited April 2021

    Zucchini, Lung nodules are very common and as long as they're small and don't change over time, they usually don't mean anything.

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  • zucchini
    zucchini Member Posts: 15
    edited April 2021

    Thank you for the reassurance, AliceBastable. I really appreciate your time and reaching out.

    The nodule was listed as small. And the notes said standard treatment was no follow up if no risk and 1 year optional ct if there were risk factors. I think a lot of that one was seeing it listed when no doctor had mentioned it to me at all.

    I keep trying to distract and reassure myself about it. Thank you so much for taking the time to help.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited April 2021

    I think mine wasn't mentioned the first time I was scanned as a pre-op for my lumpectomy - but I had extra prizes like an aneurysm and kidney cancer show up so a tiny lung nodule wasn't all that important. I think my oncologist mentioned it after a scan a few months later. That was almost three years ago. She told me at my last visit I should get a yearly CT just to make sure it stays small, but that those small ones aren't usually anything to worry about. But I'm kind of a cancer magnet so my doctors keep a closer eye on me.

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  • zucchini
    zucchini Member Posts: 15
    edited April 2021

    I'm so sorry you've had to go through so much. I hope that both of us stay free of any more unwelcome surprises.

    I still haven't heard back from the office. I don't know why I feel I wouldn't be as terrified if it didn't involve my brain. But there's nothing I can do.

    Thank you so much again for reaching out and sharing with me. I appreciate it beyond words.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited April 2021

    Hi zuchini! I have two lung nodules - well that was several years ago so possibly there are more now. As Alice said nodules, lung and elsewhere are often accidentally found and typically not problematic. I had a follow up CT about 8 months after the CT that found those when looking at something else. Near no change so haven't been scanned since. I have several bilateral thyroid nodules.... a few ultrasounds on those and same thing so no more scanning in about 4 years now.... I would recommend you get rescanned in a year just to make sure no change. Glad you contacted your onco on all the things you're concerned about. Hopefully you hear soon....

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited May 2021

    medical jargon can sound scary even when it’s really nothing concerning . The report notes anything notable but it doesn’t mean it’s anything cancer per se.


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  • Monarchandthemilkweed
    Monarchandthemilkweed Member Posts: 176
    edited May 2021

    hi! You stated your tonsils were low. Do you mean your cerebellar tonsils? Because my daughter has a condition in which her cerebellar tonsils herniate into her brainstem. It's not at all related to cancer. It causes headaches. Mostly we just monitor. I can't say much else about your other concerns but did want to let you know about the cerebellar tonsils are not much to worry about.

    Good luck

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  • zucchini
    zucchini Member Posts: 15
    edited May 2021

    LivinLife, thank you. The nodule is small. And the notes on the report say an optional rescan in a year is the usual recommendation for at risk patients. I really appreciate your reassurance. And I hope you stay well.

    2019whatayear, thank you. It's reassuring to be reminded that it is just what's noted. And could be something else or nothing to worry about.

    Monarchandthemilkweed, thank you. Yes it is the cerebellar tonsils. Thank you so much for sharing your experience and the reassurance. I appreciate it so much.

    My nurse navigator did get back to me but my oncologist was out yesterday, too. Her RN looked over my scans and said she didn't see anything but nobody could answer my real questions about the enhancements seen on mri. I'm still in active treatment and was already scheduled to see my onc this coming week. Having to wait and having nobody able to tell me what those may mean or why I was scheduled for another mri is still nerve wracking. I feel a lot better about understanding the nodule and tonsils, thanks to you all here. But managing the anxiety over the rest is going to be something this week as it looks like I won't get any real help or answers until my scheduled appointment.


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  • zucchini
    zucchini Member Posts: 15
    edited May 2021

    Hi all, thank you again for all your responses. My oncologist has pushed up my follow up mri. And we'll be adding follow up ct scans because all of this has raised the concern level.

    You were right about the lung nodule being a minor concern but still something to watch. The cerebellar tonsil is just how I was born. Atypical, but it has nothing to do with my cancer.

    The other findings are a bit concerning but we just don't know. The plan is, based on the results of the follow up mri, to go from there. It could be a virus, inflammation from something, or mets. My presentation is atypical so the plan is to investigate and raise the level of attention we're paying to the state of how I am. And keep hoping and praying.

    Thanks again for reaching out and showing such care and concern. It meant and means the world to me.

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