Hi Mark,
I think Penelope has already checked out of the thread.

I did want to point out a few facts, mainly for the benefit of the curious on how these "oncology practice guidelines" come about. There are about 20 member institutions (all comprehensive cancer centers) in a panel who, based on research, clinical trials and patient data, retrospective data, etc. analyze and amend continually the "oncology practice guidelines" for all forms of cancer.

Scans are useful components of the total diagnostic picture. They have limitations, the worst being that they are not capable of detecting a tumor smaller than 2 mm (1/8"). I AM speculating here but if you had an undetected tumor and it is a year until your next scan, it would probably be palpable, or at least create other symptoms, before the scan. This is the impression I get from several discussions with the head & neck surgeon that is the primary doing the surveillance. I have yet to meet the the Onc or RO and get their opinion since I am on a 6 month schedule with them. It was my RO that ordered the PET to begin with.

If you wish to "speculate" that PET, PET/CT or whatever will help you to avoid recurrence that's great- go for it. I felt that I had to point out, in balance, that the science hasn't caught up with that yet and that's why it isn't in the guidelines (yet?). And also it is still ultimately up to your practitioner what will actually be done in the way of post Tx surveillance.

I agree with you about going to any lengths to insure against recurrence and early detection, especially in the case of distant mets. In fact, I totally agree with almost all of your opinions. I am not always successful but I try to insert a "IMHO" in my posts when I don't have concrete facts.

As far as the "dismal survival statistics" before those of you reading this start heading for the fire exits. The average 5 year survival rate for all forms cancer is 62%. It is 53% for oral cancer. This is a complicated statistic to decipher. First off it is an "average" and persons with lower stages have signficantly higher survival rates. Secondly, many recurrences are brought about by people who refuse to give up smoking, chewing, drugging or heavy drinking.

Many of the state of the state-of-the-art treatment choices that we have today for oral cancer (such as IMRT and PBT) were initially developed for prostate cancer so there are links.

I never suggested that you or anyone "be considerate of the limits of medical care", I merely threw it on the table as my oncologist threw it my table when I told him I was a patient advocate. In fact the whole subject of triage, who gets care and who doesn't, what insurance companies pay for, how much money are they willing to shell out for a person with limited life expectancy, makes my brain melt down...