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.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)