No PET scan?

HelenBack
HelenBack Member Posts: 87 Member
in Head and Neck Cancer #1

Hi All,

I think this has come up bedfore but it's so darned hard to search this site. My husband finished his treatment (with flying colors, perhaps I will post an update) at the end of May. Since then he had an MRI which looked fine and was scheduled to have a PET at 4 months post-treatment. Like everyone else here, we were really planning on that scan (Hopefully) giving us some reassurance so we could move on a little, enjoy life a little more. BUT the darned insurance company DENIED it, we think, due to a mixup regarding an earlier denied PET that is still pending.

After battling the insurance for a while the Radonc said, "for you, an MRI is fine, less radiation anyway." I assume she means that she has high expectation of a NED.

So, my husband had one PET at diagnosis in Jan. Then he had TORS surgery and a neck dissection, and then right at the start of rad treatment, in March, he had an unplanned sort of "emergency" PET because the doctor didn't like some asymmetry in his pre-treatment CT scan. She said it looked fine (some hotspots in expected places) and proceeded with treatment. That second PET was denied by the insurance for being too soon from the previous one and now they are denying one that would normally be covered, because there's some glitch in the system that we can't seem to fix.

My question is: Has anyone else here not had a followup PET but an MRI instead? We were told at the end of treatment that the protocol is to have one post-treatment PET and then no more unless there is some suspicion to warrant it. Should we keep fighting for it? It seems that so many people get them with false positives and wait and see only to have another scan later to be fine. Maybe all these scans really aren't needed?

My husband had SCC L BOT 4 nodes involved one with very minor extracasular spread, p16+. His treatment was surgery, neck dissection, 33 rads 2 big bolus cisplatin (couldn't handle a third).

Thanks,
Helen

 

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    helen, i'm sorry u have to

    helen, i'm sorry u have to fight w/the ins co on top of fighting cancer.  it seems most ins companys r fighting pets.  i'm sure someone who has faught them will chime in w/suggestions.  wishing u the best!

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    debbiejeanne said:

    helen, i'm sorry u have to

    helen, i'm sorry u have to fight w/the ins co on top of fighting cancer.  it seems most ins companys r fighting pets.  i'm sure someone who has faught them will chime in w/suggestions.  wishing u the best!

    dj

    Helen

    I had a PET following tx but then went to CT scans every 3 mos. for a year then every 4 mos.  It's not unusual to just have the CT scans unless something suspicious pops up. They can actually see quite a bit with the CT. Unfortunately, I had a recurrance, when first detected it was by a CT scan. Assume would have been found sooner with PET but they don't normally do allot of those.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    I did have one PET

    scan after treatment, and since then it's been CT's only...with and without contrast.  I don't know if PETs are absolutely necessary after treatment or not.  Candi's recurrance was caught with a CT.....so maybe they are all we truly need.  I begged for a PET for my scan last March, and it was the Dr. who said no, not the insurance company.....Your thing sounds to me like it could very well be a glitch in the insurance company's system stemming from the prior denial....I'd fight them some more and see if anybody gives in.

    p

  • lornal
    lornal Member Posts: 428
    #5
    PET scan

    I had a CT after a year (2008).  The second year, he was going to do a CT scan, but I asked for the PET, as I was concerned with the pending changes in healthcare.  I don't know what his nurse said to the insurance company (was afraid to ask), she got it approved.  Year 3 was a CT scan.  After that, the Dr said no more scans, as it wasn't recommended.  He assured me it was medical folks making this recommendation and not the insurance company.  Never had an MRI requested.  Wouldn't do one anyway unless I was asleep.

    Did your doctor just call and ask for the PET, or did he beg and plead?  Maybe the can try the beg and plead.

  • HelenBack
    HelenBack Member Posts: 87 Member
    #6
    lornal said:

    PET scan

    I had a CT after a year (2008).  The second year, he was going to do a CT scan, but I asked for the PET, as I was concerned with the pending changes in healthcare.  I don't know what his nurse said to the insurance company (was afraid to ask), she got it approved.  Year 3 was a CT scan.  After that, the Dr said no more scans, as it wasn't recommended.  He assured me it was medical folks making this recommendation and not the insurance company.  Never had an MRI requested.  Wouldn't do one anyway unless I was asleep.

    Did your doctor just call and ask for the PET, or did he beg and plead?  Maybe the can try the beg and plead.

    Hard to imagine

    The doctor begging and/or pleading. It's just not her style. But I think she does feel that it's not necessary. Maybe because my husband had the tumor and nodes removed first. Perhaps part of the usefulness of the PET is to see if the known cancer remained after treatment. We will have a real face to face with her when we hear the results of the MRI. In a week. When she gets back from vacation.

    Grr.

  • lornal
    lornal Member Posts: 428
    #7
    HelenBack said:

    Hard to imagine

    The doctor begging and/or pleading. It's just not her style. But I think she does feel that it's not necessary. Maybe because my husband had the tumor and nodes removed first. Perhaps part of the usefulness of the PET is to see if the known cancer remained after treatment. We will have a real face to face with her when we hear the results of the MRI. In a week. When she gets back from vacation.

    Grr.

    PET after treatment

    There was still cancer on the margins of the tumor removed from the tonsil.  Maybe that was enough to get the PET through.  I haven't had one, nor reqested one since, as I was satisfied it was all gone.  My doctor has since declared "This cancer isn't going to kill me!". 

    Hopefully the MRI results are good.

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #8
    I've never had a PET

    My diagnosis came through a panoramic xray, CT scan and an MRI.  I had 2 surgeries and 30 rads.  I've had another panoramic xray since and no other scans scheduled.  I had no nodes involved and it was in my jaw.  I guess each case is just handled differently.

     

    I hope you can get things worked out.  I absolutely hate dealing with insurance stuff.  I have Medicaid and while it's a blessing, it can also be a nightmare. 

  • Sunshine60
    Sunshine60 Member Posts: 81
    #9
    Nope.....no PET here either

    My husband requested a PET also after he  Completed tx in June- Dr. Said no.  He said after 31 radiation treatments he didn't need any more radiation; that other tests could pick it up just as well; that due to the removal of tonsils and neck dissection it would light up anyway in those areas. At this point, he is scoped every 3 months By his ENT and sees his radiation doc every 4 months. 

  • katenorwood
    katenorwood Member Posts: 1,912
    #10
    hello Helen !

    I have heard so much controversy over PETS vs CT/MRI'S.  I think for a beginning dx tool the PET scan is very useful.  But it will show every single uptake in your body.  I remember going in for my initial results on my first PET and was told then they had to do a CT/MRI because they thought it already had mets to my bone and through out my body.  Holy cow was I stunned !  Turned out to be arthritis and old injuries showing up not my cancer dx.  So my uptake on this is to listen and trust your onc's, and follow up with what they feel fits your dx.  Katie

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #11
    Helen

    I am a Trustee on a pension and health and welfare fund and I would appeal their decision. Having your doctor chime in would be a big help. I am on the appeal board and we overturn decisions quite a bit.

    I finished up treatment 3 1/2 years ago and I am still getting a PET scan every 6 months.

          Jeff

  • jtl
    jtl Member Posts: 456
    #12
    PET

    There seems to be a point where the docs are less inclined to recommend scans, PET or CT. All of my doctors are saying that I no longer need anything more than annual and one of them (rad onc) doesn't even think that is necessary.  I have been getting a CT/PET combo every 6 months for the last 2 years. I was told just last month if I want another one they will write the script and I have no reason to believe my insurance (Medicare) will not pay.  I may do one more.  Also, I have been told that a CT is good for finding a mass but not so good for a small, call it a lesion.  My cancer was discovered because I had an elarged lymph node which a biopsy proved was scc.  I then had a CT in an attempt to find the primary, nothing showed up.  I then had a PET and bingo. So I like PET, but they also have the problem of false positives.  I was also told that I am at the point where a recurrance, is less likely than a new primary.  Great, something else to consider, but it makes sense.  What ever caused this the first time is likey still a factor.  Anyway the point of my rambling is that probably after a year or so, good physical exams on a regular basis may be sufficient but that is not a professional opinion.

  • ratface
    ratface Member Posts: 1,337 Member
    #13
    Duggie88 said:

    Helen

    I am a Trustee on a pension and health and welfare fund and I would appeal their decision. Having your doctor chime in would be a big help. I am on the appeal board and we overturn decisions quite a bit.

    I finished up treatment 3 1/2 years ago and I am still getting a PET scan every 6 months.

          Jeff

    It's part of the journey

    I just won my third appeal from BCBS. I've been going through this deny/ appeal roller coaster for three years now. First to answer your question, I had an initial Pet scan and follow-up were all CT scans.  It can be a double edged sword. Scans invariably find stuff, and can cause anguish as well as relief. Your protocol should be individualized, don't get hung up on what others have had. I really have had ambivalant felings on the last two appeals. That said you can win every one of them if you persist and get the doctors and nursing staff involved. I recomend you pursue this one to hone your skills in dealing with the system, at two years you will win it eventually. The  different imaging tests all measure different parameters and can be tailored to symptoms. It's help[ful to know what guidelines your insurance company uses, get a copy. You then need to fall outside the guideline to get approved.  A new symptom/complaint can develope at anytime in his recovery, document with the ONC doc and appeal. It's very frustrating but quite  doable. You are a wonderful caretaker!

Discussion Boards