Burned: The Story of Grant Achatz’s Cancer Recovery

FROM JUNE 2008: Thirty-three-year-old top chef. Stage-four cancer of the tongue. Grant Achatz has been to hell—and back

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Grant Achatz, chef of Alinea: “I was like, You’re going to cut my tongue out? There’s no way!

If you’re ever looking for Grant Achatz, just go to Alinea, his restaurant in Lincoln Park. He’s always there—usually in the kitchen, as was the case on a recent day in March. “I’m shelling fava beans. You know why?” he asked me. Is this a quiz? Because there’s no one else to do it? “It’s spring!” he answered, brightly, in a little boy voice that’s a bit higher than its usual register.

It’s an awfully upbeat answer from a guy who basically shouldn’t still be around. Last July, Achatz, one of the best chefs in the city, if not the entire country, received devastating news: An oral surgeon told him that the painful raw spot on the left side of his tongue was cancer—specifically, squamous cell carcinoma of the tongue. The tumor had grown so large that the malignant mass now occupied nearly the entire organ and was swiftly working its way toward the back of his throat. 

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“It was the weirdest thing,” Achatz recalls. “It was a Friday. There was nobody in the waiting room. I remember it being really dark. There was only one receptionist and one doctor in the whole place. Here’s this probably 42-year-old doctor and he comes in and he looks like somebody just killed his mother. You could just see it all over his face: I gotta tell this 33-year-old kid, a chef no less, that he’s got tongue cancer? How fucked up is this world?

That question rippled through the restaurant world when the news came out a couple of weeks later. How could this happen to someone so young and so completely on the brink of greatness? And how weird and Shakespearean was it that a chef would have not just cancer, but cancer of the tongue?

What followed in the next several months was a cascade of predictable events: confirmation of the diagnosis, second and third and fourth opinions, the brutal calculus of weighing options in the face of death, chemotherapy, radiation, surgery—and now the long slog of recovery. The good news is that right now Achatz appears to be cancer-free and the tumor eradicated. Moreover, Achatz still has his tongue, probably thanks to a targeted new drug called Erbitux, which he received as part of a clinical trial at the University of Chicago. And he’s back to work at Alinea, his serious, four-star foodie destination, and apparently more ferocious than ever, creating a whole new raft of the otherworldly, high-tech dishes that have become his calling card (see Dining Out: From There to Alinea). Of course the threat of recurrence hums in the background: The disease could strike back at any time and, statistically speaking, the next two years are the danger zone.

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Photograph: Tom Maday

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comments
6 years ago
Posted by Anonymous

This is a hell of a story. Thanks for sharing it in such a clear, unsentimental way. It's impossible not to root for the guy.

6 years ago
Posted by Anonymous

Amazing story. Really nice guy.

6 years ago
Posted by Anonymous

Thanks U of C for continuing to push the envelope.

6 years ago
Posted by ChgoDoc

This story is very important in stressing to people of all ages to have a regular oral cancer exam. Please ask your dentist to do so at your next visit. If they don't do it regularly, perhaps you should find a dentist who does. It may save your health or even your life.
Many more people die from oral cancers that cervical cancer. There are now simple, inexpensive screening tests using dyes, or lights, or painless tissue sampling that should be done annually.
When enough patients demand that insurance companies cover these tests, they will eventually cover the costs, as happened with Pap smear testing years ago.
Early detection is the key to successful treatment.
Greg Weathers, DDS

6 years ago
Posted by Anonymous

I told my daughter in CA about this wonderful article, in the hope that a friend of her's out there who has a similar disease could benefit from reading this and perhaps find some hope---even if it's making an appt with this miracle physician. God bless you for articles such as these---and my best wishes and prayers to the Chef!

6 years ago
Posted by Anonymous

This article has so many good examples of the difficulties cancer causes that it should be read by everyone from 9th grade on to learn how persons with the best intentions can be wrong, can rely on wrong information, disagree as to what they see or know and how much depends on luck and courage.

6 years ago
Posted by mizbrown

Hi there,

My name is Kate and I amd 34 and was diagnosed with tongue cancer in Febuary 2007. I am a non smoker and only drink socially- just wine and beer. I too am a very unusual case.

I had a near total glossectomy with 2 skin grafts 3 rounds of cisplatin and 33 rounds of imrt. I finished last May and I had been cancer free since then. I am back to working full time since July of 2007.

My recovery has been very difficult. I can speak fairly well.I do not sound like I am "grunting" when I talk. I have aspeechimpediment but I communicate fairly well with my friends co-workers My doctors would say I am 90% intelligable. I even talk on the phone. Yes it is true that many full glossectomy patietns do have to rely on a feeding tube and or can only drink thier food but it is not true for every person. Also- there are tastebuds all over the oral cavity- the tastebuds are not just on the tongue. The sense of smell plays a large part of taste.

It as a very arduus process to relearn to eat but I got my feeeding tube removed in August of 2007 now I eat almost everything I want to and almost like a regular person. I just need lots of water and I have to take small bites. I taste really well. I don't get to enjoy food for as long as I used to and its not 100 percent but its pretty good. I live in San Francisco and eat out ALL THE TIME. I eat at plenty of trendy fancy places just like Alinea and enjoy them thoroughly!

I hope that Grant's response to his treatment is 100 percent successful but the alternative treatment isn't neccesarily as horrific as you have portrayed it here. Many Physicians feel that my treatment plan was the best option so that I could live.

Maybe my experience response and recovery is one in a million. I don't know. Maybe you could all have dinner and you write a followup article to this?

Grant if you are reading this I plan to visit Chicago this summer. Iwill be CALLING and making a reservation. So you better be on top of your game the night I come in!

Sincerely,

KATE BROWN

6 years ago
Posted by Christa Demo's Mom

It was great to read this article. He has been on my mind since I first heard of his diagnosis. As he was beginning his treatment at U of C. my Daughter Christa was being seen and had since Jan '07 undergone chemo (Erbitux, cisplatin) and 35 treatments of IMRT. The Doctors felt the tumor to be gone! However, residual was found.....U of Wisc. Surgeon attempted surgery unsuccessfully, because tumor had wrapped itself around her carotid artery. We saw the Drs. at U of C and she was scheduled for a major reconstruction which margins were clear on! But,she lost her tongue and had various complications following the surgery. Then began 'clean up' radiation and chemo. Only to find that the tumor cells had traveled and grew rapidly. She lost her 10month battle on November 5th. It is an evil ugly disease. She had only found a small sore on her tongue then suddenly was a big cancer tumor! Her only initial symptom, in retrospect was a pressure in her ear and soreness at the TMJ, then this sore believed, also to be her chewing on her tongue!
PLEASE, if we can only get this information out there for all! This disease is being seen in young, no risk people more and more frequently, with devastating consequences. Christa also had become quite close friends with Kate Brown from SF, on the Oral Cancer Foundation site. They became deeply bonded in their battles against this evil disease.
PLEASE, IF ANY SYMPTOMS, INCLUDING EAR PRESSURE, SORES APPEAR...DON'T SETTLE FOR THE DIAGNOSIS OF CHEWING ON IT, SINUS TROUBLE...PURSUE TILL YOU ABSOLUTELY KNOW IT IS NOT ORAL CANCER!!! PREPARE FOR THE WORST AND HOPE FOR THE BEST.
Sincerly, Linda Jones

6 years ago
Posted by Christa Demo's Mom

OH! Christa was only 31 years old, with a 2 year old daughter and soulmate husband. Absolutely no risk factors for her either! The Doctors at U of Chicago are wonderful, and at the cutting edge of treatment.

6 years ago
Posted by Anonymous

I was diagnosed on Jan. 10th, 2008, with Squamous Cell Carcinoma at the base of my tongue. I had Cisplatin and 60 radiation treatments (2 per day/30 days) and the doctors are pleased with the tumor reduction. However, I will have surgery (I'm waiting on a date) to remove what remains. I already have a feed tube (for 1 month) and they will go ahead a perform a trache at the time of surgery due to the anticipated swelling. I am a 51 year old male in Jacksonville, Florida who could use your prayers. :)

8 months ago
Posted by desireeb

Wonderful inspiring story tears!! .. my father also battled head and neck cancer. I was once told by at least 2 oncology nurses it is one of the hardest treatments to endure I can believe it...

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