The written word here, or in emails in particular, can often cause problems between people. In a face to face conversation there is so much more transferred; the tone of the speaker's voice, the look in their eye, the volume of emphasis on certain words that even can turn helpful words into what sounds like criticism. These forum lack those very personal components that contribute the nuance to thoughts, that allow words to be interpreted potentially differently than originally intended.

Having said that, you are right, only a few posters here are actually doctors (doctor/survivors) (3) or oncology nurses (4) but there are some here that lecture on oral cancers at major universities and cancer symposiums TO doctors, so there is real didactic and peer reviewed published knowledge, as well as knowledge gained through experience, which while anecdotal, is the basis of every support group in the cancer world. However, unlike every other support discussion board I have seen, OCF has the only board which is monitored by doctors and oncology professionals to ensure that no information is passed on that is factually incorrect, harmful, or might hurt another in any way. (8 rotating reader/doctors who do not post for time and liability concerns, but monitor and advise the forum administrator when issues arise).

We have had more than our share of people leave the boards, for that very fact. These are not a democratic forum, and there are no "rights" given to any poster to say just anything they feel or suppose is correct. No pushing of herbs, no clinics in Mexico, nothing that is a fringe idea. Posts which contain scientific errors are corrected or removed; much to the chagrin of the people that voiced the removed opinion. So in many ways these forums are unlike ones at other organizations or even list servers, that allow any opinion to live in perpetuity there. OCF realizes that one of the strengths of the forums is that given the way they are conducted and archived, that they can be mined for different subjects in significant depth. Hence the thousands of "lurkers" who get their information that way rather than enter into discussions. They have been the basis of several peer reviewed scientific papers that look at the patient experience, and are being used right now again for that purpose by doctors based at the Moffit Cancer Center in Florida.

Posters from this board were asked last year to contribute questions for a clinical trial looking at not only alternative treatment protocols for people with HPV+ disease in the oropharynx, but the actual patient experience itself. After all, who knows better than someone who has had to deal with collateral issues of treatment (doctors haven"t/don't) than patients who have had to live through them? The clinical trial questionnaire will collect data each visit from patients on a custom programmed iPad provided by OCF to 100 major cancer centers, and insights into things as diverse as nausea, pain management, emotional states, sexual behavior and more will all be explored. That trial should end sometime at the end of this year, and be peer reviewed and published in 2013. Our partners in this RTOG trial are the National Cancer Institute and the James Cancer Center in Ohio. Not exactly lightweights.

I take the time to detail all this here for the purpose of separating these forums from others that are unregulated that are rampant on the web, or open to any person's opinion or viewpoint, and that they have in the past and present, been valued enough to be used in actual scientific inquiry by partners whose stature is beyond reproach.

Lastly, a personal opinion about the staging and treatment issue. The basis of the standard of care (that which has shown the most optimum results when applied by the major NCI designated cancer centers given a patient's staging and etiology) and published by the NCCN so that smaller institutions with less experience or resources can apply the most current and useful treatments, is the foundation of treatment planning and application of those treatments in the US. Once that staging is determined (and you can find the current standards of treatment for different stages of disease on the OCF main site) then for reasons both legal and to consider patients desires, they are presented to the patient PRIOR to any treatment occurring. This is the basis of what is called informed consent, that keeps institutions and doctors out of courts and in practice. Without that complete development of a comprehensive, experienced based plan, by a multidisciplinary group of doctors being presented to, and excepted by, a patient� normally nothing goes forward. So to think that a surgical procedure to remove something obvious would be the logical first step isn't always true.

In my own disease I had a very visible stage 4 tumor on my right tonsil, bilateral metastasis of the disease to numerous cervical nodes, but no distant mets at the time of scans. My team decided that instead of a surgical solution followed by radiation and chemo, that it was more advantageous to jump into radiation first, which would clean up not only the very visible and large primary on the tonsil, but attack the neck mets and the very undifferentiated margins of the disease into surrounding tissues before they had a chance to spread further. (Radiation treatment has to wait for surgical healing, or surgical healing does not take place properly.) This plan considered that there might be significant loss of tongue function via the surgical route, and to avoid that, the alternative was going to be tried first. In the end, I never actually had any intra oral surgery, the radiation did it all. My surgery was limited to a unilateral neck dissection at the end of the grueling rads. So what might have seemed obvious to me and you (cut the majority of this F%^&ing thing out of me asap), was actually not the best approach, and I even as a lay person, was part of that decision making process, fully informed of why, and with a choice to opt out of the idea. It is also why today my tongue mobility and function is superior to many, because despite some damage from the radiation which has subsided over the years, there was the actually tongue structure there at the end it all to work with. I signed informed consent papers that took the treatment ideas all the way through to its conclusion, BEFORE anything in that plan was implemented... an important part of that process.

That is why in my first post back to you I questioned if you actually had been staged, the part that determines the whole enchilada before scalpel meets skin. So staging you and talking to you about it is the proper sequence of events to determine what the big hospitals are doing that has had the best results, and to get your sign off that that idea is something you are good with. Like you, I had a tumor so big that my gardener could tell it was cancer.

So to those of you that are posting here, please be patient with a person's desire to explore things their way (even though we know how bad delay or lack of a second opinion is to ultimate outcome) and Ben, be patient with a group of people that have watched too many people not make it, because of poor decision making, (based not on intelligence, but lack of knowledge about navigating all this) or a lack of a sense of urgency to find the best place and treatment plan in an expedient manner.

I didn't intend for this post to be book length, as I need to finish preparing for my upcoming lecture at NYU, but this thread was starting to get out of hand. I hope that it was both tactful and helpful.