[quote=Uptown]So your question is whether anyone else came up with 40+% 3 year survival rate or worse 5 year?

I was given a 23% 5 year survival rate about 11 years ago,based on staging of T2N2bM0.

Maybe a suggestion of losing the chip might help. No one here is out to "get" you. We've all been down a road similar to you, as a patient or caregiver. We have nothing to hide and nobody to trick. I can't speak for anything before you came here, but I can assure you no one here has anything but your best interests at heart. [/quote]

Thank you for the "chip" advice. Nevertheless, I came here and posted a question. Now your belittling my attitude. I will give your comments the attention they deserve.

[quote=Maria]Hi, Ron
to add to the confusion, prognosis in a specific case is also impacted by the quality of the institution and the adherence to the treatment protocol by the patient. I *think* I saw a Dana Farber institutional study that indicated either a 3 or 5 year survival in the 60 or 70 percent range for HPV negative oropharyngeal cancer - the research noted that their institutional results were better than others published. So, whose stats are 'better' - the SEER data that looks at a much larger number of patients - but includes those that had treatment at less experienced institutions and broke protocol, or a smaller study at a top-flight institution where, I would imagine, the patients had sufficient medical and counseling support to stay on protocol and the adminstation of the therapy itself was correct? It's not an easy question to answer, and I have taken statistics at a graduate level.
Maria [/quote]

Yes, I seen other facilities make similar claims on their sites. More like advertisements. Sure, the SEER data is what it is. Look at the link I posted in my first post. Very interesting how the author "used" the data. I am also interested in finding any info as to whether in-country Vietnam impacts. Also interesting is I came across something about John Wayne. He did a movie in Nevada at the time of the nuclear testing and an extraordinarily of those involved in the film died of cancer.

Cancer is big business now-overshadowing the prior revenue generator-cardiovascular disease. I expect we will see much bolder "ads" from cancer "centers" trying to draw business.

Here is a calculator.

http://lifemath.net/cancer/headneck/outcome/

http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates

[quote=PaulB]http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates [/quote]

Thanks. I saw that too. However it says "For cancers of the oropharynx and tonsil, the relative 5-year survival rate was 66%, but survival by stage is not available." So far the best info I found was in the link in my first post.

Thank you Paul for your responses. I will not post further on this board. Reading over and over again how the SEER stats are meaningless is tedious. But again, thank you for your understanding.

[quote=PaulB]Here is a calculator.

http://lifemath.net/cancer/headneck/outcome/

http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates [/quote]

Oh boy. Did the calculator 41%. Better spend my retirement money!! Thanks.

I shopped til I dropped yesterday lol. I just did my info at diagnosis in 2009, but don't have a flash card with iPad to see all the graphs, etc. I probably did more looking into stats, numbers, after the fact. It energizes me beating the odds or whatever. I have this internal fight everyday to keep moving forward.

Breaking Bad Binge this past weekend, if you watch, had a good scene with Walt talking to another patient while waiting for their PET/CT scan. Some good quotes.

"Who's in charge? Me.That's how I live my life."

Stats are a melting pot, however - studies aimed at specific things (exercise while in treatment? Continuing smoking? Drinking?) Those are stats that are worth paying attention to because they are indicators of what you should do to try and help your own situation.

Paul, I have so outlived your calculator that it won't even work for me.

Not my calculator. I Never followed it. It's cool though.

We haven't had such a lively discussion since the "Peg Wars" which I didn't start lol. This one is called Prognosis Determination Wars! Only joking.

I also think as time moves on a person's thought changes, mine did. and some may not care to discuss as much now, avoid the subject, dismiss, change facts, depending on how far out from treatment they are. Persons with recurrences, up coming anniversaries, scanxiety, have smoking history, other illnesses, even being non HPV related have different thoughts too, making us all different.

Another quote from Breaking Bad:

"To hell with your cancer. I've been living with cancer for the better part of a year. Right from the start, it's a death sentence. That's what they keep telling me. Well, guess what? Every life comes with a death sentence. So every few months I come here for my regular scans knowing full well one of these times, hell, maybe even today, I'm gonna hear some bad news, but until then, Who's in charge? Me. That's how I live my life."