Ok you guys have re opened my big BIG complaint from late September. I had a regular visit with my ENT and at the end I asked him to set up a PET scan. In short he said NO.

Now you all have heard me rant about the stupid application of logic in the choices doctors make...This one has me going. I have good insurance (after my wife went back to work at one of the worlds largest insurance companies) so cost is not the problem. The ENT said he had just come back from a "seminar" on the subject and they "just weren't worth the trouble" (because of false positives.) He then reminded me about my 3 year 7 month statistics. I suggested to him that the statistics weren't in my favor when I got this stinking cancer at way too young an age (statistically) and I told him that I could give him several names of OCF members whom are presently fighting PET found recurrences. He was not moved.

I find it humorus that doctors would not go whith a test because "there is no long term clinical data supporting it's use (PET)" when in fact PET units are being installed everywhere! How do they expect to pay for the damn things?!

My personal and wacky belief is that the competing MRI-CT equipment is still not fully paid for so the manufacturers are spreading rumors to give them the edge.

My problem now is to find a way around my ENT without offending him. (He is a great guy otherwise) He is obviously stuck in the larger statistics mode and I am more concerned with my personal small group (of one) survivor mode. Remember in a group of one you cannot have 65% survival! Any suggestions on how I might go about getting a well deserved PET scan would be appreciated.

From what I read on the net about pet scans, they seem to be worthy of use. Pretty much all the sites say the same thing. I do not read anything about false positives. My ENT referred to false positives as being a problem & yet he seems pretty progressive & proactive about making sure it's not cancer. How DOES one sort through all the subjective opinions? How DOES one find out what facility is the most skilled at reading pet scans accurately?

I have an update from my PET scan questions with my RO.

Some background: First off, my RO is the top rated IMRT RO doc in the country according to the Castle top 500 US docs reference book. UCSFCCC is the 7th highest rated CCC. Initially they insisted on a PET scan which my HMO paid for - Any tests UCSF requests are automatically done and paid for by the HMO so I know that money is not an issue.

PET scans are often done initially as part of triage to determine whether you are treatable or not (i.e. distant metastesis issues). In my case it verified the cancer site and indicated no others.

The NCCN guidelines don't call for an annual PET scan as others have mentioned, adding yet another reason why some don't get them.

My RO did tell me that UCSFCCC typically orders an annual MRI for H&N patients so the HMO has set one up for me on Nov. 28th.

Personally I wish they would include an annual PET scan as part of my surveillance protocol but I have yet to be able to talk anybody into it.
There has to be other factors why some get them and some don't. I didn't have an occult tumor or any regional or distant metastesis so I suspect that may be a reason.

By the way, my experience with my H&N surgeon is that he doesn't place much stock in any kind of scans. It's the oncologist or the RO that typically have ordered them. He has always had the last say since ultimately "direct visualization" been been the end result of a questionable scan (of which I have had more than a few of). His opinion is that the visual/palpation exam is the gold standard. He was also trained at UCSFCCC.

As far as the most accurate reading - go to a CCC for starters. In my case the HMO radiologist does one reading then the CCC radiologist and RO do a second. The more sets of trained eyes the better. My research has found the same information as yours - that PET's are very accurate and PET/CT even more so. They are less accurate when scar tissue and the healing process is involved as are other scanning modalities such as MRI's.

Erik- false positive are indeed something discussed often when talking about PET scans. Reports of rates as high as 20%. But it is not the technology that is at fault here, it is the general nature of what a PET finds. If you have read about them on the main body of the web site, you know that they do not find cancer, they find cells where metabolic activity is high.... measured by the above average burning of sugars in the cells. Certainly malignant cells have a higher metabolic activity than normal cells. But many things besides cancer can cause this to take place, and not all those are life-threatening issues. So a positive PET doesn't necessary mean you have a met or recurrence of cancer. As Gary has mentioned here before, the current gold standard for a more definitive read is a PET/CT fusion scan. Things that show up on the PET but not the overlaying CT are unlikely to be cancer. The best of both technologies yields a much better result.

The cancer center I go to is afilliated with MSKCC and they apparently believe strongly in the value of the fused PET/CT, and judging from the double sided foam tape holding some of the bits together I suspect it gets a lot of use. Probably because they are only charging about $1800.00/usd for a scan, including the follow up doc's visits from what I gather on my insurance claim.

Thing is it will show other items, in my case a severly inflammed shoulder and post radiation muscle healing, which in untrained hands could be mistaken for a lot of mets to the shoulder and neck.

I wonder how much of the various doc's reluctance to use PET/CT is based on cost and how the nubmers work via the medical group/HMO cost reduction bonus.

I've got a UK based healthcare insurance provider, and while I have regular coverage worldwide, in US and Canada I've only got emergency medical/evacuation because of the HMO situation. Judging from the comparitive costs I'm seeing, I understand why.

But, I'm digressing and getting on my quality of the healthcare business soapbox.
Bob