Strange PET/CT Scan Problem

JADot
JADot Member Posts: 709 Member
edited March 2014 in Colorectal Cancer #1
Hi Guys,

History: Dx Christmas 05, Stage II, 2 very large, high-grade tumors, 6 months of FOLFOX, ended July 06. Have been NED since. Clear PET in August 06, CEA at 0.5. Everything was just peachy, until last Thursday.

I had my every-6-months PET/CT last Thursday at Stanford. Today I got the results. It's pretty much all clear except for a 1cm leision on my liver, seen from the CT but not the PET. The radiologist thinks that it could be a camera/technical problem, but does not rule out a liver mats. That said, he also said that since the leision was 1cm but it did not light up at all on the PET, he thought it was very likely to be a technical problem rather than an acutal tumor matastasis.

My CEA count will be available tomorrow or next Monday. My onc has scheduled a follow up PET/CT in 3 months. My insurance company will need a really good sense of humor to allow 3 PET scans in 10 months.

Meanwhile I am not sure if I should celebrate a clear scan or be really worried about the thing on my liver. Has anybody here ever experienced this before?

Thanks,
Ying

Comments

  • jams67
    jams67 Member Posts: 925 Member
    #2
    If you just tried the CT again and not the PET, then maybe the tech problem wouldn't show up this time. If it does show its ugly self, then follow up with a PET. You insurance may be more forgiving that way. Jo Ann
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #3
    This is definately one I haven't heard of before. If the radiologist thinks there was a technical problem with ct, they should be redoing it at no cost! Great sign it didn't light up on the PET.. My husbands lit up on PET. Onc told us if they didn't light up , it was probable they were benign lesions or scars from injury etc. There are other causes of liver spots other than mets so do not be really worried, but do have it rechecked. God Bless
  • chynabear
    chynabear Member Posts: 481 Member
    #4
    hopefulone said:

    This is definately one I haven't heard of before. If the radiologist thinks there was a technical problem with ct, they should be redoing it at no cost! Great sign it didn't light up on the PET.. My husbands lit up on PET. Onc told us if they didn't light up , it was probable they were benign lesions or scars from injury etc. There are other causes of liver spots other than mets so do not be really worried, but do have it rechecked. God Bless

    I would take it as good news that it didn't light up on the PET and it was that size.

    Second, I think that if they believe in the slightest that it is a technical problem, they should re-do it at no cost.

    Third, I am so envious that your insurance covers PET scans at all! I was Stage III with spread to nodes and had two PET scans that insurance later denied and I had to fight tooth-and-nail to get them to cover the existing scans. Afterward, they say they need "medical necessity" for them to be approved! They make me so mad lol.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #5
    Hi Ying -

    So I can imagine how worried you are, but I think a 1 cm "thing" (I won't say "lesion") that shows up on CT, but not PET most likely means nothing of clinical significance - maybe even as they say nothing at all (a technical error). Of course I was Stage IV, but I had a "thing" show up on CT that didn't line up with what showed up on PET and could not be explained by breathing at the wrong time (and what was biopsied positive on the liver during my surgery was the area that lit up on PET - not the "spot" on CT). SO, I happen to be a PET advocate!

    Our stages are different and that may well make a difference with insurance. My insurance company always drags their feet with PET, goes through "mistakes" etc. - then they finally ask my radiologist for a statement of medical necessity. They then drag their feet some more. I don't know exactly what he says - but I do know that one component is that "CT scans are inconclusive". Insurance takes that and then finally pays. In fact - this time they paid after only 2 months (took 4 months to pay the previous one and the one before that).

    Good luck, Ying. I am sure you are fine, but I understand your worry.

    Take care,
    Betsy
  • betina61
    betina61 Member Posts: 642 Member
    #6
    Hi Ying, I know perfectly well how you are feeling, I am going through something not similar but that brought me back in my feelings at the time when I was dx. In your case being stage II and going through 6 month of treatment I think you should be fine,and is probably an error, but just in case I will be praying for you.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #7
    I'm also a little disappointed that they didn't offer to redo- at no extra cost - if they thought it was a techical probem. But that being said, if a 1cm lesion didn't light on PET that is a great sign -- certainly sounds like its not a met. Follow-up in 3 mos sounds like a good move. Good luck Waiting isn't easy - even ith 99% likely bening thing-ies inside us....
    Tara
  • catherine58
    catherine58 Member Posts: 92
    #8
    Dear Ying

    So sorry you are having this worry and am thinking of you. Hope the CEA count will be positive. I'm at the beginning of this road so can't offer any technical/practical know-how but all the other replies sound encouraging, My friend was told her four year old daughter, who had kidney cancer, had a secondary on the liver (following a CT scan). It turned out to be a technical error and now she's a bouncing eight year old.

    All my very best, Catherine
  • nanuk
    nanuk Member Posts: 1,358 Member
    #9
    I would love to hear from a tech, or similar expert regarding the various scans and what they can and can't see, and how much of the results are dependent upon the expertise and experience of the human reading the scan.
    Most of the time my scans are "Probable this or that, consistant with....., etc. rarely is there ever definite language specifying exactly what my "this or that is..
    Which test is best, and why can't we just combine them all into one big virtual machine that looks at everything?
  • jerseysue
    jerseysue Member Posts: 624 Member
    #10
    My PET didn't show anything but the CT seen the leisons in my stomachs. I'm hoping your scan is a tech problem. My CEA had been climbing that is why my onc did a CT after the PET.
  • JADot
    JADot Member Posts: 709 Member
    #11
    Thanks everyone for answering my post.

    YOU ARE THE BEST!!!

    I was in such a panic that I couldn't even think earlier. I think the idea of re-doing just the CT scan makes a lot of sense. I left a vm for my Onc. Let's see what she says. Also, I get my CEA count on Monday. After that I'll right-size my panic accordingly.

    Thanks again for your thoughtful assessment and suggestions and I'll keep you posted on progress.

    Cheers,
    Ying
  • JADot
    JADot Member Posts: 709 Member
    #12
    jerseysue said:

    My PET didn't show anything but the CT seen the leisons in my stomachs. I'm hoping your scan is a tech problem. My CEA had been climbing that is why my onc did a CT after the PET.

    Hi Sue,

    Ouch, what did they find out from the CT to correlate to the climbing CEA? You must have been worried sick.

    Ying
  • JADot
    JADot Member Posts: 709 Member
    #13
    nanuk said:

    I would love to hear from a tech, or similar expert regarding the various scans and what they can and can't see, and how much of the results are dependent upon the expertise and experience of the human reading the scan.
    Most of the time my scans are "Probable this or that, consistant with....., etc. rarely is there ever definite language specifying exactly what my "this or that is..
    Which test is best, and why can't we just combine them all into one big virtual machine that looks at everything?

    Me too! You'd think for $8000 they can tell you for sure, don't you.

    I was told that PET is gone with pinpointing tumors because it works with sugar uptakes. But PET is bad with positioning, which CT is good at, that's why they combine the two. So in a way, they are moving in the direction you want - one test to show it all.

    Just wish they can eliminate the 1cm artifacts :-)

    Ying
  • JADot
    JADot Member Posts: 709 Member
    #14
    catherine58 said:

    Dear Ying

    So sorry you are having this worry and am thinking of you. Hope the CEA count will be positive. I'm at the beginning of this road so can't offer any technical/practical know-how but all the other replies sound encouraging, My friend was told her four year old daughter, who had kidney cancer, had a secondary on the liver (following a CT scan). It turned out to be a technical error and now she's a bouncing eight year old.

    All my very best, Catherine

    Thanks so much for your encouraging words, Catherine. I am counting on it being an imaging artifact and that I'll grow up to be a bouncing 50 year-old in 10 years.

    Cheers,
    Ying
  • JADot
    JADot Member Posts: 709 Member
    #15
    hopefulone said:

    This is definately one I haven't heard of before. If the radiologist thinks there was a technical problem with ct, they should be redoing it at no cost! Great sign it didn't light up on the PET.. My husbands lit up on PET. Onc told us if they didn't light up , it was probable they were benign lesions or scars from injury etc. There are other causes of liver spots other than mets so do not be really worried, but do have it rechecked. God Bless

    Hi Jo Ann and Hopefulone,

    Thanks for your replies. Excellent idea about redoing the CT. Called it in to my onc. You're right, they did see some other spots on my liver earlier, now that I am thinking about it. I think they said it was nothing last night. I just have to go and confirm the location. Thanks for the great tips. I am calmer already.

    Cheers,
    Ying
  • jsabol
    jsabol Member Posts: 1,145 Member
    #16
    Hi Ying,
    Hubby and I have been away...cross country skiing north of Montreal (only a New Englander would take a nothern vacation!) and was sorry to read about your most recent worries.
    Since my initial work-up CT scan in December 03, I have had 3 small artifacts/cysts/???. The radiologist and surgeon were somehow sure that they were not cancer; we did not do a biopsy, nor a PET. In retrospect, I'm not so sure why I took that opinion, but good news is they were right. Most of my scans continue to show 2 or 3 "previously visualized, stable in size" spots, which we all continue to believe are just unique and benign spots. Hope this helps; after 3+ years, I'm glad to say that so far they have been right.
    Hang in there; stay focused on getting the reassurance you need. Hugs, Judy
  • jerseysue
    jerseysue Member Posts: 624 Member
    #17
    JADot said:

    Hi Sue,

    Ouch, what did they find out from the CT to correlate to the climbing CEA? You must have been worried sick.

    Ying

    Mine correlated directly my rising CEA was telling me that the cancer came back. It just took awhile for them to find out where. I'm glad they found it and I'm now on my last chemo of 12. I'm hoping for good scans in April.

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