Pet Scan Denied by Insurance

Hi everyone,


 I'm 45+ male that was recently diagnosed (last Friday) with HPV SCC and this is my first post.  My ENT was able to snip a piece of tissue from my tonsil area to confirm the malignacy.  My ENT submitted to have a Petscan and a CT done but my insurance (Aetna) denied the Petscan and only approved neck and chest CT scan.  I have asked my ENT to do a peer to peer review to try to get it approved, but no word back yet.  I have a couple of questions for some of you who have gone through this ordeal.

1. How important is a pretreatment PET scan vs CT scan?

2. Anyone have any experiences to share about getting a PET scan approved?

3. If my insurance won't pay for it is it worth paying for a pretreatment PET scan out of pocket?


I've read so many posts on this site already and I am truly impressed by the group of people that selflessly spend time helping so many others. 


Thank you,




  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    More Common

    It's more common than you think. I had to do an Ultrasound, CT and then they approved the PET. It's their game and we must just play by the rules. Your ENT should work with your PMD to get the required tests completed. Good Luck.

  • tommyodavey
    tommyodavey Member Posts: 726 Member

    If it were me, I'd file an appeal and fight very hard to get the PET scan.  It is the only test that shows the cancer cells lit up.  The test isn't perfect and sometimes it lights up areas that aren't cancerous.  The radiologist who reads it can normally tell what's going on.  And yes, it is too expensive for you to pay for unless money is no object.

    We hear about denials for the test but it's rare.  If you file an appeal it may get approved.  Get your doctor involved like Sprint Car Dude said.

    Good luck getting it approved. 

  • donfoo
    donfoo Member Posts: 1,770 Member

    sorry to hear about the diagnosis but it is early days. You should be able to request a second opinion and get other tests and insight. 

    During treatment planning, find a facility that uses a tumor board; another way to get other input to get a comprehensive diagnosis and plan.

    As time is of the essence, fighting insurance companies is both stressful, frustrating, and time consuming, none you need to burden you with what is placed on you now.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    Medical policy

    It looks like the language in their medical policy suggests that PET is used when the primary isn't your case, it sounds like you found the primary.  Looking in your chest is done because that is the likeliest place for this OPSCC to go (if it decides to be ornery)...  A CT will see anything to worry about.  I initially had only a CT which did see a solitary little "something" on the opposite side of my disease (right lung, left sided disease).  As such they did do a PET scan just to be sure it wasn't didn't light so it was ruled out as being anything...and now all of my follow-up I believe is CT's.  I've had only the 1 PET and I don't think will have any more.

    I agree with those above...have your clinicians call and do a peer to peer...  But if you've caught this at all early you may not need a PET scan.  The generally accepted guidelines suggest that PET scan is NOT unless there are clinical indications that warrant it.

  • MindOverMatter
    MindOverMatter Member Posts: 13
    Good News on Petscan

    Hello everyone,

      First I want to thank everyone for the responses, very helpful. I got news this morning that the Physicians Assistant (my normal ENT was out of office) was able to do a peer-to-peer review and got the Pet scan and CT scan approved.  Apperently the facility (UPMC Passavant) has a machine that can do both the Pet scan and the CT scan at the same time.  I'm not sure what was said to get it approved, but I will let this forum know anything I find out as it could be important to someone in the future. So this was some good news for me and I have combo Pet/CT scheduled for Monday. 


    Also wandering if anyone has any oncologist recomenndations for the Pittsburgh, PA area?




  • OKCnative
    OKCnative Member Posts: 326 Member
    Glad to hear everything has

    Glad to hear everything has been worked out. When I first went to my cancer center they warned me that some insurance companies do not approve PET scans or will only approve one a year. My docs said not to worry because CT Scans were the gold standard for many years. I was lucky and my insurance has approved 3 PET scans so far.

    That said, it was a PET scan that led to a very scary misdiagnosis that my cancer had spread to my heart and lungs and I was terminal - for 13 days I thought I was a goner until a CT Scan proved the PET Scan was simply seeing a really bad infection.

  • MindOverMatter
    MindOverMatter Member Posts: 13
    Pet/Ct Scan

    Greeting folks,

    I had my PET/CT scan done today and waiting for the results.  Hopefully I don't get a scare like you did.  I can't imagine waiting 13 days to determine if cancer had really spread to other parts and was possibly terminal.  Maybe that is one of the reasons they started using these CT/PET combo machines, because they offset the weakness of each other. 


    Mind over Matter