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FGodmother
FGodmother Member Posts: 52
edited March 2021 in Not Diagnosed With a Recurrence or Metastases but Concerned

I have been having a sharp, stabbing pain in my left hip which does not feel like bursitis or osteoarthritis. I had Xrays which found no fractures or dislocation. Had an MRI on that left hip today for further investigation. In the meanwhile, saw my new MO on the 17th of Feb where I had several blood draws. She called me very concerned about a trend she saw. CEA tumor marker a year ago was 7 ng/ml (normal is 2.5 for non smoker.) Six months ago the value was 11. Last week’s bloodwork report had the value now at 31.4.

My MO wanted to do a PET scan immediately, but insurance has denied it, after going back and forth with them for five days. So now we wait for insurance approval for a CT scan and nuclear bone scan. I have been absolutely making myself crazy trying to figure out where the cancer is now. I am completely convinced it is back, since every document I have seen says CEA > 20 ng/ml Is a sign that either the tumor wasn’t completely removed or there is recurrence.

Anyone here with bone Mets have a sharp stabbing pain when moving a certain way? I have severe asthma with very small nodules in my lungs at my last CT scan. So it might have reoccurred there. Tom Petty sure had it right. The waiting is the hardest part.

Fairy Godmother

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2021

    Fgodmother,

    One thing to bear in mind is that there is no one way that we experience mets. I know this is hard to do but please wait until your imaging/testing is done rather than try to guess what might be happening based on others. FWIW, I had absolutely no pain or symptoms and still had a bone met. Take care.

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  • kathabus
    kathabus Member Posts: 205
    edited March 2021

    The waiting IS the hardest part. Hang in there. It seems that there are benign reasons this could rise. Try to take time for yourself and do things that bring you peace and distraction.

    Off topic a bit...what causes your MO to check for a tumor marker? For stage 1a, I was surprised by this. I am a 1b and I was told we won't be doing any tumor marker testing....

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2021

    kathabus,

    Doctors have different approaches when it comes to tumor markers as they are not reliable for everyone. I am stage IV and have never had tumor markers analyzed. My mo does not put much weight on their reliability. If I have a pain or anything that might be a symptom of progression, she just orders a PET.

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  • moth
    moth Member Posts: 4,800
    edited March 2021

    Fairy Godmother, I hate that you're having to wait and have all this stress. Tumor markers can rise for other reasons - so I'm still hoping yours turns out to be a something else.

    I was stage 1a and never had markers done until mets were confirmed by imaging. My MO does them now but they're not terribly sensitive in my case. My 15.3 is just consistently a bit elevated - it wouldn't have given us indication of shrinkage or progressions. I don't think there's robust evidence to use them as a screening thing. From what I've seen it's probably better to stick to the traditional approach - know the symptoms, report anything that doesn't resolve after 2 weeks and get it diagnosed.

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

    Hip pain can also be caused by something like a pinched nerve. And a friend who lived with stage 4 cancer for many years told me her MO didn't even mention her tumor markers until they were well into triple digits.

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

    Hi FGodmother! Just want to send support and validate the difficulty of waiting... Please let us know how your scan goes....

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  • FGodmother
    FGodmother Member Posts: 52
    edited March 2021

    Thank you all who have replied. It means a lot to me that there are others who have been there-done that who care. I am still awaiting scheduling of CT scan and nuclear bone scan. In the meanwhile, I am working, listening to instrumental Christmas music, and watching videos of laughing babies to keep my spirits up. I have a trip to visit my cousins starting the 15th, so I am hoping I will have some results by then. I will keep you all, posted when I know more. Love and hugs to you all!

    FG

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  • FGodmother
    FGodmother Member Posts: 52
    edited March 2021

    Finally scheduled for full body CT this morning and nuclear bone scan this afternoon. Hoping to know something next week.

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

    I"m so glad you were able to get those scans scheduled and done (by now) so timely!!! Hopefully you don't have too long to wait for results. You have a great plan for coping through all of this.... good self-care as hard as that can be through times like this... We'll wait to hear from you....

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  • FGodmother
    FGodmother Member Posts: 52
    edited March 2021

    I’m hoping some of you will be in my pocket as I see my MO late this afternoon to discuss findings of the MRI, CT scan and nuclear bone scan. Praying it’s bone Mets, but will handle whatever news there is.


    Fairy Godmother

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited March 2021

    Sending fortitude FGodmother!

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  • moth
    moth Member Posts: 4,800
    edited March 2021

    In your pocket!

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  • FGodmother
    FGodmother Member Posts: 52
    edited March 2021

    The news was about as good as could possibly be when we are talking metastasis. There is a lesion/mass of 9mm on my L1 vertebra, with another about the same size in the right posterior acetabulum (hip socket). The MO wants to send me for a biopsy on the vertebra, and when results are returned on whether it is still hormone +, we will sit down for a discussion of treatment plan. It could have been so much worse!

    See you on the bone Mets threads.


    Fairy Godmother

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

    Thanks for the update FG Big hugs.

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  • moth
    moth Member Posts: 4,800
    edited March 2021

    Well I am sorry to hear that but glad it is bone only. Hugs

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

    Sending gentle hugs and warm energy your way FGodmother!!!

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