Most of us probably have gone through several doctors. After all you normally do not go to a CCC because you have a small lump or a non healing sore. (i.e. dentist -> ENT etc). It is clear that you need at the very least a team (RO, MO, surgeon) or even better a CCC. WIth all modalities on the table the treatment is different than if you just go to say a surgeon. This includes QOL issues and organ preservation, that is why one should go to a CCC.
However !! once you have a team in place it is dangerous to go on to talk to doctors until you hear what you like. The life vs job thing irks me a bit too, how about a teacher, lawyer, anybody for that matter?

M

After re reading these posts, I watched the video again. This time around I too was irked by the "smugness" factor that he would rather be dead than have the tongue surgery I and many others here have had. The New York Times article backs this up: [quote]You�re going to be the tongueless chef who�s still a genius!� he told him. �I�ll just die,� Achatz said repeatedly.[/quote] (in the Oprah video he gives the impression he had no surgery when he did have a neck dissection with lymph nodes removed and the scar to prove it). So even though he had a wife and even two sons (born in 2001 and 2006) he was willing to die rather than have his tongue cut. Unfortunately I understand his feeling all too well except that my wife and son are the only reasons I agreed to my salvage surgery. The New York Times story tells it all and what is especially fascinating is the description of tongue cancer woven into the article and the eloquent discussion of TASTE in oral cancer patients. I know my sense of smell has become incredibly sensitive after the tongue surgery. Here is the NYT article: I highly recommend reading the whole thing: A Man of Taste
Enough pre dawn posting (mucous choked me awake again)
charm

Wow: the more I read, the wilder the quotes get:
Here is one from the Chicago paper:
[quote]He spent the next few hours tearfully talking through his options with his girlfriend, Heather Sperling, a food writer who lives in Manhattan. They poured strong gin cocktails, at 11 in the morning, and sat on the roof of her apartment building. He wondered what would be better for his boys�the presence of a disfigured father, or to die and let them simply forget. Maybe Angela, his ex-wife, would remarry, giving them a new dad, one who could talk, who could eat, whose disabilities they wouldn't have to explain to their friends.[/quote] Here is the full Chicago magazine story:
Burned
Getting closer to dawn now
charm

I've followed Grant Achatz's story with some interest - partly because I live in Chicago and partly because his diagnosis was the first time I'd heard of oral cancer... which I later went on to think I had but turned out I didn't.

Not having had the disease, I'm in no position to comment re his treatment vs. other treatment protocols. I will say though, that having followed his story and his career here in Chicago (faily meteoric rise in the foodie world), he appears to be a... what's the right word? Dickhead. He's arrogant, a tad unkind and ultra-competitive, etc. Alinea, his restaurant, has been lauded up one way and down the other, as has he and his previously referenced meteoric rise. Remember, these days, chefs attain celebrity status just like regular Hollywood folks (deserved or not).

I say that not to defend his choice of treatments because of his career but only by way of explaining that for someone like him, perhaps altering his life to allow in other options wouldn't be feasible.

As far as Oprah is concerned, her "knowledge" of oral cancer and typical treatment protocols, etc is probably limited to whatever Achatz's advance folks told her. She has a history of doing very limited research before she "endorses" something (see James Frey), as well as a history of fawning over people who might add to her fame (as if).

Anyway, he's writing a book now called Life, On the Line. A treatment for it is in the link attached. Seems fairly interesting - he discusses the cancer in depth among all his cooking stories. While he preserved his tongue -- like so many of you, his treatments were awful and clearly knocked the stuffing out of him. He mentions that he discovered that he "didn't have to change his life at all" which is crap, in my opinion -- that's the arrogant brat in him coming out. His life has changed, it's evident physically and it's evident when you see him appear on tv now. If there's one thing about all of this that bothers me, it's that if he's been humbled by this, if it's modified his thinking at all, he won't allow the world to see that. Makes me wonder why.

http://www.eatmedaily.com/2009/06/grant-achatz-is-writing-a-memoir-life-on-the-line/

As a one time cook in several local resturants, I can assure you that his arrogant additude is the way the majority of chefs are. It must be in their DNA.
That being said. I thought I understood that he found a doctor willing to do the surgery last, if it were still needed. Which is not unlike what my doctors did. Every single one of my doctors adv. me that doing the surgery first meant cutting away too much valuable tissue. That surgery in my case should be used to "mop" up what the chemo and rads left behind.

Amy

Reading your profile: 73 GY on each side? Are you sure the total wasn't 73GY with the field encompassing both sides. The maximum is usually 72GY and I never heard of anyone getting 146 GY and surviving. My doctors are already saying they pushed it by giving me another 25 GY on top of the 72 GY first time around. And yes, I agree with you that surgery should be the last resort, especially now that I have had it.

73 Gy each side does seems to be a lot.
You also need to consider that this (Gy) is the energy absorbed per kg matter. If you were to get just 6 Gy whole body radiation this would be deadly. On the other hand you could have an extreme exposure of your small finger and have no "serious" problems.

M

I report what was told to me. I was adv. by my RO to adv my ENT 73GY on each side. I did 45 days of hell.

I was told that the recovery from surgery after doing chemo and radiation wouldn't be as good and that with my particular tumor it was very very likely to reoccur and come back aggressively. I was essentially not given a choice. It was what the tumor board reccomended and what was reccomended country wide. So he was taking a big risk. I'm glad it worked out especiallys ince he is a chef but I have 2 friends who I met along my journey- they were in thier 30's and they both tried chemo and radiation first and had many complications and they both passed away.

I just think its dangerous to reccomend his path of treatment for people dealing with tongue cancer who had been reccomended to have the surgery.

THe Oncologist at WvU hospital had me ligned up for everything but a transplant LOL That;s why I went to Ohio State and that was the 3rd CCC I went to. I think I had a total of 9 Doctors. then after had 3 more.Oh this life we j=have is fun LOL Never know who the heck you are going to meet next.