Hi, haven't been on for awhile

Sandi1
Sandi1 Member Posts: 277
in Colorectal Cancer #1
Hi everyone, i haven't been on for awhile, but my husband is doing well. Recently, he found out that his CEA number has been going up. Mind you it is only at 2, but he has been at -5 for over a year. The onc decided to send him for a PET scan to see what is going on. We had to change our health insurance to Cigna this year as his work required it. They have denied his request to get the PET scan, their reason was that his diagnosis is not life threatning. I mean are they crazy? What kind of people are they. I just don't understand this whole insurance thing, but I would say if someone has stage 4 colon cancer and has had it for 4 years, and needed a pet scan, i would say that it is because something is going on and that could be life threatning. I am beside my self, I don't know what to do. We were doing fine and i was happily going along my life feeling as though i would at least have my husband with me for many more years, but now all that insecurities are flooding back and i'm just plain scared, for him and me and our children and our future.

Thanks for letting me vent.

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Hey Sandi:)
    I was always told that since the PET is such an expensive test, that it not just an automatic approval and that insurance has to review and then approve it.

    What my old onc used to do to justify a PET was to do a "CT first." If something showed there, this set the stage for the PET scan.

    With my new practice, they don't believe in PETs too much... - and it's hard to argue with them...there are plenty of cases where "fasle/positives" are a dime a dozen and not always reliable...but most of the tests we get aren't always definitive or conclusive either.

    If I had my choice between CT or PET...I'd lean towards the CT. I've only one done at the new place, where at my old I was getting up to 4-a year.

    So much can light up on a PET that is not accurate that it can leave you wondering more than helping you....at least with a CT, you can see mass - and where there is mass - there is reason to look....

    Last time I did PET, it "indicated" that I had testicular and throat cancer, because the urine and the saliva lit up.

    So, you might ask for the CT - if something is there, this could lend credence to the fact that a PET may be warranted. But, it's always about stepping through the process.

    Try not to worry incessantly just yet, plenty of time for that if it comes to it. A 2 is a good solid reading...I've never heard of a negative CEA reading, but you learn something everyday.

    CEA is not always a good indicator (perhaps it is for you.) When it was in my colon and liver, CEA was a good marker...when it got to my lung, that was out the window as I had a reading of 0.5 with a tangerine sized tumor embedded in my rib cage.

    Let's see what you come back with first and then we can peel it all back and look at this some more.

    -Craig
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #3
    Sundanceh said:

    Hey Sandi:)
    I was always told that since the PET is such an expensive test, that it not just an automatic approval and that insurance has to review and then approve it.

    What my old onc used to do to justify a PET was to do a "CT first." If something showed there, this set the stage for the PET scan.

    With my new practice, they don't believe in PETs too much... - and it's hard to argue with them...there are plenty of cases where "fasle/positives" are a dime a dozen and not always reliable...but most of the tests we get aren't always definitive or conclusive either.

    If I had my choice between CT or PET...I'd lean towards the CT. I've only one done at the new place, where at my old I was getting up to 4-a year.

    So much can light up on a PET that is not accurate that it can leave you wondering more than helping you....at least with a CT, you can see mass - and where there is mass - there is reason to look....

    Last time I did PET, it "indicated" that I had testicular and throat cancer, because the urine and the saliva lit up.

    So, you might ask for the CT - if something is there, this could lend credence to the fact that a PET may be warranted. But, it's always about stepping through the process.

    Try not to worry incessantly just yet, plenty of time for that if it comes to it. A 2 is a good solid reading...I've never heard of a negative CEA reading, but you learn something everyday.

    CEA is not always a good indicator (perhaps it is for you.) When it was in my colon and liver, CEA was a good marker...when it got to my lung, that was out the window as I had a reading of 0.5 with a tangerine sized tumor embedded in my rib cage.

    Let's see what you come back with first and then we can peel it all back and look at this some more.

    -Craig

    Craig what said is such a
    Craig what said is such a parallel to me. My old onc did the same thing. At first my insurance approved PET scans but once I was NED the insurance denied a PET scan so he would order a CT and when something new showed up. My new onc has the same opinion as your new onc about CT vs PET. I am glad to hear that from you. I was a little taken aback when he first told me that.
  • Sandi1
    Sandi1 Member Posts: 277
    #4
    Sundanceh said:

    Hey Sandi:)
    I was always told that since the PET is such an expensive test, that it not just an automatic approval and that insurance has to review and then approve it.

    What my old onc used to do to justify a PET was to do a "CT first." If something showed there, this set the stage for the PET scan.

    With my new practice, they don't believe in PETs too much... - and it's hard to argue with them...there are plenty of cases where "fasle/positives" are a dime a dozen and not always reliable...but most of the tests we get aren't always definitive or conclusive either.

    If I had my choice between CT or PET...I'd lean towards the CT. I've only one done at the new place, where at my old I was getting up to 4-a year.

    So much can light up on a PET that is not accurate that it can leave you wondering more than helping you....at least with a CT, you can see mass - and where there is mass - there is reason to look....

    Last time I did PET, it "indicated" that I had testicular and throat cancer, because the urine and the saliva lit up.

    So, you might ask for the CT - if something is there, this could lend credence to the fact that a PET may be warranted. But, it's always about stepping through the process.

    Try not to worry incessantly just yet, plenty of time for that if it comes to it. A 2 is a good solid reading...I've never heard of a negative CEA reading, but you learn something everyday.

    CEA is not always a good indicator (perhaps it is for you.) When it was in my colon and liver, CEA was a good marker...when it got to my lung, that was out the window as I had a reading of 0.5 with a tangerine sized tumor embedded in my rib cage.

    Let's see what you come back with first and then we can peel it all back and look at this some more.

    -Craig

    Thank you
    So, let me tell you the reason she is insisting on a PET scan. He had fallen last year and thought that he had broke his rib, they sent him for an x-ray only to find out that the rib was not broken, just bruised - but in that process they also seen something in his lung. Which his cancer has metastised to his lung, but those had all disappeared with the aggressive chemo, so this was new. She has been watching it and it hasn't done anything, but now that his CEA is going up, she needs to see if something is going on with that so that she can adjust his meds. Now i understand this whole process of the approval for the tests, we have been through it plenty of times when we were with Aetna. Aetna always sent us a letter saying that they are reviewing this request, but for now you cannot go. Our new health insurance Cigna, just plain said NO - no review, no nothing. I am mostly mad at the statement - " your diagnosis is NOT life threatening". does he have to be dying for them to say, ok, now you can have your PET scan, even though we know it's too late to do anything for you. If I had a million dollars, my husband would not be worrying about this crap. I try to do everything i can for him to lessen his stress, but I cannot handle this. I grew up in Canada and we never had these problems, if you needed it, you got it. Here, I don't know enough about the health system to fight them and get what we need, so it is up to my husband to do that, and that kills me. Sorry for venting. Very aggravated.
  • Sandi1
    Sandi1 Member Posts: 277
    #5
    Sundanceh said:

    Hey Sandi:)
    I was always told that since the PET is such an expensive test, that it not just an automatic approval and that insurance has to review and then approve it.

    What my old onc used to do to justify a PET was to do a "CT first." If something showed there, this set the stage for the PET scan.

    With my new practice, they don't believe in PETs too much... - and it's hard to argue with them...there are plenty of cases where "fasle/positives" are a dime a dozen and not always reliable...but most of the tests we get aren't always definitive or conclusive either.

    If I had my choice between CT or PET...I'd lean towards the CT. I've only one done at the new place, where at my old I was getting up to 4-a year.

    So much can light up on a PET that is not accurate that it can leave you wondering more than helping you....at least with a CT, you can see mass - and where there is mass - there is reason to look....

    Last time I did PET, it "indicated" that I had testicular and throat cancer, because the urine and the saliva lit up.

    So, you might ask for the CT - if something is there, this could lend credence to the fact that a PET may be warranted. But, it's always about stepping through the process.

    Try not to worry incessantly just yet, plenty of time for that if it comes to it. A 2 is a good solid reading...I've never heard of a negative CEA reading, but you learn something everyday.

    CEA is not always a good indicator (perhaps it is for you.) When it was in my colon and liver, CEA was a good marker...when it got to my lung, that was out the window as I had a reading of 0.5 with a tangerine sized tumor embedded in my rib cage.

    Let's see what you come back with first and then we can peel it all back and look at this some more.

    -Craig

    Thank you
    So, let me tell you the reason she is insisting on a PET scan. He had fallen last year and thought that he had broke his rib, they sent him for an x-ray only to find out that the rib was not broken, just bruised - but in that process they also seen something in his lung. Which his cancer has metastised to his lung, but those had all disappeared with the aggressive chemo, so this was new. She has been watching it and it hasn't done anything, but now that his CEA is going up, she needs to see if something is going on with that so that she can adjust his meds. Now i understand this whole process of the approval for the tests, we have been through it plenty of times when we were with Aetna. Aetna always sent us a letter saying that they are reviewing this request, but for now you cannot go. Our new health insurance Cigna, just plain said NO - no review, no nothing. I am mostly mad at the statement - " your diagnosis is NOT life threatening". does he have to be dying for them to say, ok, now you can have your PET scan, even though we know it's too late to do anything for you. If I had a million dollars, my husband would not be worrying about this crap. I try to do everything i can for him to lessen his stress, but I cannot handle this. I grew up in Canada and we never had these problems, if you needed it, you got it. Here, I don't know enough about the health system to fight them and get what we need, so it is up to my husband to do that, and that kills me. Sorry for venting. Very aggravated.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #6
    Sandi1 said:

    Thank you
    So, let me tell you the reason she is insisting on a PET scan. He had fallen last year and thought that he had broke his rib, they sent him for an x-ray only to find out that the rib was not broken, just bruised - but in that process they also seen something in his lung. Which his cancer has metastised to his lung, but those had all disappeared with the aggressive chemo, so this was new. She has been watching it and it hasn't done anything, but now that his CEA is going up, she needs to see if something is going on with that so that she can adjust his meds. Now i understand this whole process of the approval for the tests, we have been through it plenty of times when we were with Aetna. Aetna always sent us a letter saying that they are reviewing this request, but for now you cannot go. Our new health insurance Cigna, just plain said NO - no review, no nothing. I am mostly mad at the statement - " your diagnosis is NOT life threatening". does he have to be dying for them to say, ok, now you can have your PET scan, even though we know it's too late to do anything for you. If I had a million dollars, my husband would not be worrying about this crap. I try to do everything i can for him to lessen his stress, but I cannot handle this. I grew up in Canada and we never had these problems, if you needed it, you got it. Here, I don't know enough about the health system to fight them and get what we need, so it is up to my husband to do that, and that kills me. Sorry for venting. Very aggravated.

    Hi
    So sorry to hear that you are having difficulty with your new insurance, but don't give up just yet.

    Perhaps if your doctor were to write a short history and reasoning letter to the insurance company you might get a different answer.

    Also, check with your state government and see if they have an insurance advocacy program. Some do.

    If they will only approve a CT scan, then go for it.

    Hope that all gets resolved.

    Marie who loves kitties

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