Petscan lit up but can't find spot with scans

Dipope
Dipope Member Posts: 2
in Colorectal Cancer #1

I am a stage 4 survivor. I have had a couple of recurrences and each time my CEA has been a good indicator. I've been NED for 3 years.  During a routine check up my ct scan was clear but my CEA raised from 1.9 to 4.9. I had a petscan which had one spot light up on my abdomen with an uptake value of 5.1. I then had an ultrasound of the area but they can't find anything in the area of concern. Has anyone else had a petscan light up but are unable to find a mass or area to biopsy?

The plan is to redo the CEA test in 6 weeks and to repeat the ultrasound.  Should I wait and see or start looking for a second opinion. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Quite the decision

    I went through the same thing up to the point of the PET scan, which did pinpoint my problem. 

    Six weeks sounds like a heck of a long time. When you've got Cancer, it sounds like forever. I would be really really worried. 

    When I had my reuccurence, I had my CEA done one week after I was told me previous one had jumped. So, about two weeks, in which my CEA jumped 10 points. I had a CT Scan which showed NOTHING. So, I had a PET Scan which showed a small tumour in my liver.  When I had it ablated, the tumour was much bigger than what the PET scan measured. Just a little over the size they like to albalte. 

    These tumours can grow fast. 

    This is just my thoughts, but if it were me, I would do another CEA sooner than six weeks. My Onc was out of town, so I had a nurse order my CEA and I paid out of pocket. I am so glad I did, because a 10 point jump in two weeks is huge. Something was growing and fast. 

    I wish you all the luck in the world, whatever the decision, whatever the result. 

    SUE

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #3
    The CEA is worrying, but to

    The CEA is worrying, but to answer your question, I've had a PET scan light up nodes in my armpits and neck. The onc could feel them for swelling and decided to wait, and it came up as nothing at the next scan. I'd do another CEA test, see if the numbers hold or drop, then push for an earlier scan date. Good luck.................................Dave

  • Dipope
    Dipope Member Posts: 2
    #4
    Thanks

    according to the radiologist the PETscan spot was supposedly superficial so it's frustrating that it can't be found. I'll check into another CEA test

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited June 2016 #5
    Hmm, interesting. When I had

    Hmm, interesting. When I had my lst pet scan I had my throat light up. They said it was probably inflamation. A few days later I had some sort of flu with a sore throat. It was weird that it showed up on there but I wasn't aware of it yet. Anyway, my understanding is that other things besides cancer can light up.

    For me the CEA is not an indicator. My surgeon suggested I not bother even doing it anymore.

  • BillO60
    BillO60 Member Posts: 72
    #6
    PET Scan was inconclusive

    I was diagnosed with Colo-Rectal cancer Mar 2015.  They did a CT scan and discovered some anamolies on my liver.  They followed up with an MRI and then a PET scan.  There were 3 areas in the liver that lit up but the results came back inconclusive.   

    Fast forward to December 21, 2015 and in the middle of 8 cycles of Oxaliplatin and Capcetibine I had a CT scan because of a problem with my gall bladder.  The scan still showed the same 3 fuzzy areas on my liver.

    I finished the chemo in April 2016 and they did a follow-up CT scan at the end of May and the liver showed 3 lesions, all new, and none of them in the same area that showed up as inconclusive before.  My CEA had gone up to 14 from being <1 in July 2015.

    So in about 4 months I went from having a clean liver to 3 mets (1 of which is about 2 inches).  I can't say how quickly they appeared and grew but I'm guessing within about a 90 day window.

    So, I would absolutely agree with Sue that a follow-up is definitely required.  I had an oncologist who always wanted to wait and see.  I now have a new oncologist. 

    Best of luck

    Bill

     

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