Actually several OCF readers and posters are much more familiar with some of the subtle nuances of these subjects than many doctors treating oral cancer patients. The "confusion" comes when the doctor has not had the time to keep up on the latest results on HPV or radiation more than once, In many places, an oncologist treats many different types of cancer besides oral cancer. they do their best but....
To me, getting out the message that Erbitux as a single agent chemo for HPV is not a proven succesful drug treatment is personal, not academic. When my RO decided to quit prescribing Eribitux for HPV because he saw first hand the increased numbers of recurrences in HPV patients, starting with myself five years ago, he risked angering some powerful people above him whose reputations and fame were based on those early Erbitux studies. All I'm risking is some nasty posts, some nasty PMs while I stand to benefit from keeping some poster from having a recurrence. So in the risk balance equation, I'll risk approbation if it means I can keep even one OCF reader out of the recurrence club.
When things are highly personal to me and my doctors back up the medical evidence behind my positions, the only confusion here would be to think that I could be dissuaded from posting these warnings and similar ones.
I agree wholeheartedly that there should be discussions with your doctor. But that discussions should be two way, such as asking why do you say no more radiation when CCC are doing it 3 times? Or why are you scheduling a Petscan this early when it usually gives a false positive this early?
Or why don't you have my exact TSH blood level number before TX ? And in this case, Why are you giving me a drug that has not been clinically proven in any trial to work all by itself on HPV+ patients? And know enough that if the Doctor says oh it has in Bonner or Extreme that is not correct . They would not be bad doctors, nor bad people for falling for the Eribitux Kool Aide. My MO is wonderful and he believed with his whole heart 5 years ago that those glowing studies (which did not track HPV) meant this was the best possible treatment for me. Heck, I read the studies and even more reports and they were fantastic.
But the real world has intervened in the last 5 years and that academic glow has diminished with each and every recurrence. Better to be a little confused and not join the recurrence club
Charm