Husband's CT Scan, still unclear

Ruthmomto4
Ruthmomto4 Member Posts: 708 Member
in Colorectal Cancer #1

I know most people would be relieved by these results but I am just not, I try so hard to be positive but I am not getting a definitive answer. His CEA which has been a good indicator for him in the past went from 1.34, 2.24, 4.88. 

The ins refused a pet scan and only allowed a CT Scan which showed his fluid accumulation on his liver at the resection is finally absorbing (it's been a year), there is still an area of nonspecific hyper attenuation at the inferior aspect of the collection. There is also still a 7mm nodule inferior to the resection margin. It was 8mm last time, not sure if it was measured wrong then, now or if it shrunk. Everything else was clean.

Am I wrong to think without a clear PET I should still be worried? he was having pain on the right side but that turned out to be a kidney stone, and they confirmed that in the scan. Next appointment is 1/19 for another CEA. Any opinions would appreciated. Thank you!

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    January for next Cea?  I

    January for next Cea?  I guess I'd want to make that sooner.  Will they let him just come in for a blood draw to keep an eye on the trend?  Other than that I'd try to relax.  If the Cea continues to rise than ask the doc to push for a pet scan.   I would try to get Cea every two weeks, unless it drops.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #3
    jen2012 said:

    January for next Cea?  I

    January for next Cea?  I guess I'd want to make that sooner.  Will they let him just come in for a blood draw to keep an eye on the trend?  Other than that I'd try to relax.  If the Cea continues to rise than ask the doc to push for a pet scan.   I would try to get Cea every two weeks, unless it drops.

    His doctor would never do a

    His doctor would never do a CEA that that quick, in fact I thought January was early for him 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #4
    Push it

    I would push for an earlier CEA test. When my CEA started rising, as in really jumping up, I wanted another one to see what it would be. It had jumped another 10 points, so two weeks, 10 points. I had to pay for that second blood test, but it was worth it.

    And now onto PET Scans. My insurance refuses to let me have one, but my Oncologist says I need one. So I get a PET Scan and the Oncologists fights with the insurance afterwards. I have had two, and this happens each time. 

    If the Oncologists wants a PET Scan, don't let the inurance tell you you don't need one. Get the PET Scan and fight with the insurance afterwards. 

    My liver tumour, for some reason, did not show up on the CT Scan, but lit up light a light bulb on the PET. It was 2 cm, nothing to sniff at, or mess around with. 

    You have every right to be worried. If it turns out that you were worrying for nothing, who cares. Go with your gut, and push for what you think needs to be done. 

    Sue - Trubrit

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #5
    Trubrit said:

    Push it

    I would push for an earlier CEA test. When my CEA started rising, as in really jumping up, I wanted another one to see what it would be. It had jumped another 10 points, so two weeks, 10 points. I had to pay for that second blood test, but it was worth it.

    And now onto PET Scans. My insurance refuses to let me have one, but my Oncologist says I need one. So I get a PET Scan and the Oncologists fights with the insurance afterwards. I have had two, and this happens each time. 

    If the Oncologists wants a PET Scan, don't let the inurance tell you you don't need one. Get the PET Scan and fight with the insurance afterwards. 

    My liver tumour, for some reason, did not show up on the CT Scan, but lit up light a light bulb on the PET. It was 2 cm, nothing to sniff at, or mess around with. 

    You have every right to be worried. If it turns out that you were worrying for nothing, who cares. Go with your gut, and push for what you think needs to be done. 

    Sue - Trubrit

     

    I agree with Sue.  you need

    I agree with Sue.  you need to fight for these things.  My husband gets a pet/ct and the doctor has to fight the insurance each and every time, but a ct alone does not pick up his bone mets.   And with a Cea rise, they should be monitoring it,  my husbands is checked every two weeks.  Don't count on the doctor thinking about you guys...unfortunately we have to self advocate and push the doctors most times.  

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #6
    The doctor did fight for it,

    The doctor did fight for it, very hard actually. I do not like the man but I can honestly say I know he fought for it. I did get some clarification from my husband that the area of hyper attenuation is apparently normal for where it is near the fluid accumulation from the resection. 

    The dr keeps saying a cea isn't proof but I don't agree. why check it then.  Little  rises maybe but doubling twice is a big deal.  I am going go ahead with the plans to move his care to Sloan Kettering. My husband want a sit back approach and I am tired of letting cancer control us, I think it's time he took control and got more proactive here. 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #7
    Ruthmomto4 said:

    The doctor did fight for it,

    The doctor did fight for it, very hard actually. I do not like the man but I can honestly say I know he fought for it. I did get some clarification from my husband that the area of hyper attenuation is apparently normal for where it is near the fluid accumulation from the resection. 

    The dr keeps saying a cea isn't proof but I don't agree. why check it then.  Little  rises maybe but doubling twice is a big deal.  I am going go ahead with the plans to move his care to Sloan Kettering. My husband want a sit back approach and I am tired of letting cancer control us, I think it's time he took control and got more proactive here. 

    I agree...you need to be

    I agree...you need to be proactive.   Something is going on with the Cea, best to figure it out.   Good luck!

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
    getting started better

    Waiting another 3 months after already doubling CEA twice, and over the upper range CEA limits, ca 3.5 - 4.5 for most test brands, would send us to look for another doctor pronto.   We often pay for extra CEA and other blood tests ourselves, and do them as we see fit.   Never more than 6 weeks apart.  You can order blood tests online if you have to.

    You can't fault the insurance company for taking the CT scan first, the radiologists themselves prefer it as a better CT image than std PET/CT and the smaller mets usually won't light up a PET scan.  But we do dismiss doctors that can't get on board about more blood biomarkers, taken more frequently, as lightweights or insurance sellouts.  

    I've discussed other biomarkers and blood tests before. More than one CEA above a 5 or 6, or other markers too high, spaced a few weeks apart, is serious business that demands more careful followup. 

    These days, we carefully treat the +- monthly biomarkers, with mild daily chemo and off label adjuncts like celecoxib and cimetidine (CA19-9 and e-selectin positive), as well as therapeutic high powered supplements, like the LEF protocols as a starting point.  In the US, the ADAPT protocol (xeloda + celecoxib) is the daily chemo backbone that is available in some places.   

    Waiting on the insurance or stuck-in-a rut doctor never really worked out for us. 

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