Matthew,

Many folks here support getting second opinions and going to designated CCC. You have certainly done the CCC part. As you mention, several doctors are present at your visits. That seems like a pretty good time for various opinions to be discussed.

My advise is if you trust this facility and team then go with their recommendation. Feel confident you are getting the best advice and course of treatment then fully embrace and support it and sleep well.

Here's the alternative. You seek another opinion from another group. Your recommended treatment is one of their options but they slightly lean toward something similar but different. They seem a competent bunch but what do you do now? How do you choose? Did you make the right choice? Unless you like second guessing as a hobby, why get yourself into this situation.

You are really really fortunate to be getting care at a truly world class institute that uses a team based approach. It is a no brainer for me.

For most who are seen at lesser qualified groups, the suggestion of second opinions has more relevance. Don

Don, thank you so much..you made perfect since to me and provided me with the answer I was looking for. I'm going for it with Stanford, all in and will never look back. This is what my heart tells me I must do. You are so right, I can't keep going back and forth in my head as I need peace of mind to start the healing process.

T2NO BOT Squamous Cell is the final diagnosis after 2 biopsies, CT's, MRI's and PET scans. I start Cetuximab on Monday 12/30 at Stanford and will do it every monday thereafter for 7 weeks. The following Monday(January-6th) I will add radiation daily. I am taking part in a clinical trial which pits Cisplatin vs. Cetuximab for efficacy and side effects. Can't wait to get through it and be cancer free!

Sounds like you got a plan in motion. Once you get started things will progress along.

Given you are in a trial, did you ask or what answer did you get to the fact that cisplatin/carboplatin given concurrent with rads are supposed to enhance the effect of the rads, acting as a radio-sensitizer. AFAIK Erbitux is not platinum based so is the platinum effect not something you are missing?

Is the primary purpose of the trial to determine if there are less side effects with Erbitux while still being as effective as Cisplatin? Do you happen to have the trial reference number? I'm sure this info would help others who may be offered a seat in the trial bus.

Thanks and good luck, Don

RTOG 10-16

I made a post containing this info on 12/23/12, but can't link it with my ipad. It was a letter from MSKCC to the editor the Journal of Clinical Oncology about Erbitux vs. Cisplatin. The report mentioned RTOG 10-16, I believe, has been ongoing for almost 5 years. I'll try to link another way.

http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049

Hi there sorry way back when I was pushing for the surgery I was thinking it was confined to the oral tongue and not HPV related. duh... Christmas crap dulled my brain. since it sounds very much like what you described - a slow creeping SCC (mine sounds similar - but was confined to the tongue and was not HPV) it only started to hit the nodes (ended up positive in one) after the biopsy - but I am sure I'd had it as a slowly growing lump in my tongue for a few years as that is how long it was bothering me for. what you are doing sounds correct for HPV positive base of tongue. I am wondering if it moved from bottom to top. Anyway best of luck with treatment.

Here is a link to an OCF post about the RTOG 1016.

Here is the link to the full study document.

It appears to have started in 2011 from what I read.

Thanks. Lots of info in the link. This is RTOG 1016 phase III. I believe it may have started in 2009 as a concept phase 0, then onto phase I, II. Phase III started in 2011. I didn't read where it ends, but thought I read before it was a 5 year study, so maybe 2014/15?

Here is the link to the status of the RTOG trials. 1016 is still open so it is going to be a few years before the stats are fully compiled.

Trial is definitely still open. I talked with one of the Doctors at Stanford who said it was reopened because they needed a little more data. Anyway, took my first large dose of Cetuximab on Monday. Had a world class headache that night and half of yesterday. But, things seem to be normal again today so I can't complain about that.
Also, I was wrong about my tumor...apparently it is a T4a, because of the location deep in the tongue muscle, hence the reasoning to bypass surgery....the size of it was described to me as being T2 sized so that was where the confusion lay.