Throat Cancer Follow Up Tests

And what your treatment path has been.  The NCCN guidelines for head and neck cancer are the most often used clinical guidelines.  For locoregionally advanced disease that was treated definitively with radiation and chemo they do appear to recommend PET in the 3-6 month window.  If you had surgery, they appear to lean toward CT.  I'm not sure what others have had done but I had surgery/radiation and my team only recommended CT @ I think 6 months post and then annually thereafter.  I only had a PET before treatment.

I do think that if you are low risk for recurrence (HPV+, small tumor, limited lymph node involvement, no high risk features like extranodal extension, etc) you are probably fine with just a CT.  On the flip side, if you had a large primary tumor and a lot of lymph node involvement or your tumor was close to your midline, etc...that you could be right to pursue the more sensitive PET.  Part of insurers hesitation around PET is that if you do a PET too soon after treatment it picks up all the "healing" activity, so they are sometimes not as useful.\

Your oncologist should be able to use the NCCN guidelines or other clinical guidelines to argue for you.  You shouldn't have to do it yourself.

Good luck.

My perspective:  I am four years and one week out from initial diagnosis.  Until now, all of my scans have been PET.  The problem with PET is that you will sometimes "glow a little" and if the radiologist reads it differently than the last radiologist your doc panics and starts doing stuff and it can run-up costs and worry the patient.  The false positives are a problem.  The CT scans are cheaper, of course, and less useful, but depending on the discapline of medicine you are talking about - *are*  - the recommended follow-up scans.  My understanding is that the standard of care the ENTs follow calls for CTs and the oncologists like their PETs, but please don't quote me on that.  You absolutely may quote me as saying there are differing ideas of what's prudent and necessary and those disagreements can be reasonable; and not all about money.

My ENT - a former President of the American Academy of Otolaryngology - (in other words, not a man prone to error) thought he was going to have to tell me my cancer was back.  It was a false positve read of the result of the PET sscan.

For my most recent scan I got downright...uh...blunt, when my last PET was changed to a CT by the insuance company and the nurse called to confirm my scan and notified me that I'd be having a CT instead of a PET and I told her "No, I wouldn't." The shortest version possible is: I told her I wasn't a revenue unit for the scanner nor a cost-savings vehicle for the insurance company and my doctor, who has a lot of experience and a license, wants a PET scan and that I was going to get a PET scan or no scan at all.  (it turns-out this is routine (I didn't know that), and my oncologist had not even been told)  They were going to do the scan they could get paid-for. 

The answer I gave them was the equivalent of "Oh, no you don't." 

I did say something about the insurance company giving free medical advice without a license and how I wished the pre-cert nurse would alert the insurance company to the letter I was going to write to my lawyer just in case I did need the PET so there was no question who was to blame if the cancer returned and wasn't found early enough.  She said something to the effect of a CT was better than nothing and I reminded her of how much radiation I had already taken to my head and neck and that I wasn't going to absorb any more for a test that my doctor did not feel was adequate.

I got a call back a few days later with the new schedule for my PET scan.  But other than my conversation with the scheduling nurse, I did nothing else.

This time the oncologist said she'd rather have a PET (because of some recent ear pain which might be referred pain from elsewhere), but she'd accept a CT if that's all we could get this far out from my treatment. She knows that four years out it is unlikely they will authorize a PET and she seems less convinced of its necessity.  So, I'll go have whatever they tell me I can have this time.

All I have been able to find (for myself) are a few recent articles which all conclude that there really is no conclusive evidence of the superiority to either scan or even no scan in the absence of symptoms.  There just isn't enough evidence to form a statistically significant conclusion and justify a preference. 

I just do what my doctor says.  If I didn't trust her, I would go elsewhere.

But I don't negotiate with my insurer.  Threaten?  I'll let them be the judge of that.  But if they want to practice medicine, I'd like to know their clinic hours and how I get an appointment as covered by my policy (free) as their opinion seems to be when it isn't their responsibility.

By the way, I wasn't bluffing.  I wasn't going to go get a scan / any scan just so the imaging center could easily bill.  Not only am I on MY side, but I am also on my doctor's side.