U of M says only Chest XRAYS once a year after tx???!!!

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  • osmotar
    osmotar Member Posts: 1,006
    #22
    longtermsurvivor said:

    they just don't want to fight the review people

    Precertification is a big hassle for these guys, some of which have decided to blow smoke at us rather than do the right thing.  Yes, PET and XRays contain radiation, but the dose is rather small.  You can compute the cost/benefit ratios yourself.  What do  you think logically is more risky under the circumstances of someone who has already had cancer.  The relatively low dose of radiation from a PET scan, or the risk of reoccurance of a cancer, which is anywhere from 10-50%?  Their reasoning is designed to befuddle lay people.  It makes no logical sense. 

     

    I recently had a laugh at this kind of BS with my ENT oncologist.  The med ONC had just told me, no more PET scans, only CT.  When my wife asked why, he said "because PEt is so expensive">  LOL, I didn't pitch a big fuss, becauase I have had all the treatments possible.  Two series of rads, radical surgery, othing much left they can do if I get this again, so I'm not pushing for follow up.  But my situatio is unique in that regard.  ENT Onc says, "he just doesn't want to hassle with precert."  Bingo, we understand this......

     

    There is no agreed upon schedule to follow up with PET and CT, but what is proposed to you is NOT REASONABLE by anyone's standards.

     

    Pat

    PET

    My ins co deemed PETs for me were medically unnecessary , guess they forget who was the one that had cancer, they will allow a CT every 4 months if a doctor requests it. I saw my rad doc the other day and he asked why he didn't have the most recent PET scan , all he had was a CT from last Dec  that the onco sent him.. I told him about the ins comment and all he said was WTF... I laughed and he shook his head. My onco did schedule ms PET last dec and that's when she and I received the notice from the ins. , of course she and I could appeal but would good would that have done? I felt the PET for me was like asecurity blanket , head to knees .

  • jtl
    jtl Member Posts: 456
    #23
    longtermsurvivor said:

    start here

    This artical is long, sorry.  But it is spot on to your need.  See especially page 35 where it talks about follow up surveillace.  I'd copy every line of this and present it to them on my next visit, telling them "what you have proposed for our follow up is unacceptable to us, and here is why...."    Also, the frequency with whicch the rest of us have gotten CT/PEt is discussed in a lengthy thread from within the last six months.   It should be found 10 or 20 pages down from here.  You can copy all of that to hit them with if you want to.   To me, what is being proposed to you is a deal breaker.  You only have one chance to get this right.  If they won't bend, Id be out of there in a second finding a new doctor to do the follow up with.

     

    www.metroatlantaotolaryngology.org/.../PET%20scan%20indications.pdf

    You will have to paste this directly into google and it will come up.

     

    BTW, I've been through three sets of follow up in St Louis, MO.  The standard there is CT at 3 and 9 months, PEt at 6 and 12.

     

    Pat

    Hi Pat

    I don't know if the article I pulled up is the same one because it did not have 35 pages but informative never the less.  What I got out of it was that PET/CT together had an accuracy of between 86% abd 90% and was superior to contrast-enhanced CT.  It also recommended PET/CT at 2-5-8 and 14 months which is more frequent than my 4-6 and 6.  I am now 14 months out and at my rad onc appointment last week he said that at some point he would no longer recommend PET/CT.  I get an exam with a  Nasopharyngolaryngoscope every 3 months but the article referenced a Panendoscopy which I think may be different but in any event it said there is no evidence that the Panendoscopy does much if any good.  I found it interesting and timely that the article addressed a 2nd primary which apparently happens way too often.  This  is exactly what my ENT said at my last appointment.  In fact he said at this point he is following for that rather than a recurrance of the initial disease he even used the term "cured".  Based on the fact that a new primary is most likely to appear in the neck, esophagus or lungs in the case of ex-smokers I am going to push for frequent oral exams with a scope and at least an annual PET/CT.  I have no idea what Medicare thinks about the frequency of scans but I have been lead to believe they will pay providing a qualified MD believes in the necessity. I wish there was a concensus on the frequency after the first 14 months on NED.  Thanks for the link.

    John

     

  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #24
    Patti1967 said:

    I guess my point for you lol

    I guess my point for you lol i got off target, sorry:), was i would insist on more then just an xray:) 

    Patti

    You go Cris

    Yes be prepared for battle.  I would not accept an xray if it had of been David.  This stuff can be caught earlier with better scanning.

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