Top Chef Fights Oral Cancer to Preserve Sense of Taste

For any chef, a sense of taste is the key to mastering food. Without it, creating elaborate dishes and understanding how ingredients work can become impossible. And, if you’re one of the top chefs in America, the prospect of losing something as vital as taste can be devastating.

But four years ago, Grant Achatz, whose Chicago restaurant Alinea was rated by Gourmet magazine the best restaurant in America in 2006, was faced with that grim predicament.

In 2002, Achatz started noticing a little white dot on his tongue. Dentists told him he had just been biting it too much. A few times a year, dentists continued to tell him the lesion had to do with stress—it was nothing serious. By June 2007, as symptoms became defined and food became painful to eat, Achatz knew something had to be seriously wrong. So again, he went to his dentist who, as Achatz recalled, “looked at me and said, ‘You’re biting your tongue.’”

A week after visiting his dentist, Achatz, who was 33 at the time, made an appointment with an oral surgeon, had a biopsy, and was diagnosed with stage 4 squamous cell carcinoma of the mouth.

According to the American Cancer Society’s website, about two out of 10 skin cancers are squamous cell carcinomas, and they tend to be more aggressive than basal cell carcinomas. Squamous cell carcinomas are more likely to spread to lymph nodes or distant organs, according to the ACS website.

Usually squamous cell skin cancers are found early enough that they can be treated at an early stage and removed without radiation or chemotherapy. However, there are rare cases, like Achatz’, where further treatment is needed – especially if the cancer is larger. Recurrance rates for aggressive cases of this type of cancer can be as high as 50 percent for large, deep tumors, according to the American Cancer Society.

One of the biggest risk factors for squamous cell carcinoma of the mouth is smoking, but Achatz said he has never smoked.

“I had a golf size ball in my neck. My tongue was swelling,” Achatz said. “It was very apparent something was wrong. But back in 2002, the awareness of oral cancer was very low, and dentists didn’t have the knowledge to diagnose it as cancer.”

The cancer cells that had initially started as a little white dot on Achatz’s tongue had multiplied rapidly, and after his diagnosis, doctors felt surgery was the only option to keep Achatz alive and prevent the spread of the malignant cells. The chef was told by four medical institutions that three-fourths of his tongue and a part of his jaw would need to be removed to ensure survival. After this treatment, he would not be able to taste, swallow or speak.

“There was a point going through all these medical consultations where I was like, ‘I would just rather die,’” Achatz said. “I didn’t want to live the life they were describing after the surgery.”

Achatz, whose successful career revolves around working with food, continued researching, convinced there was another option outside of partial tongue removal. Within a few weeks, he found a medical team at the University of Chicago who used chemotherapy and radiation to destroy the lethal cells.

“They treat medicine in same way we look at food, “Achatz said, referencing the molecular gastronomy approach he takes to food. “They take all the pieces, spread it out on the table and look and indentify each part. They figured out a way to essentially render surgery meaningless.”

Losing His Sense of Taste
Right away, Achatz began chemotherapy and radiation. While the chemotherapy made him nauseous, Achatz said the worst part of the process was the radiation, which he said was like having the worst sunburn imaginable from the tip of his nose to his collarbone—on the inside.

“There was a point when I remember standing in my kitchen over the sink and pulling out the lining of my throat,” Achatz said. “It was shedding like a snake skin.”

With each 20-minute radiation procedure, Achatz felt his physical body worsening. By the ninth treatment, he wasn’t able to taste his diet Dr. Pepper. By treatment 15, Achatz said he was in agony.

“Talking was painful. Eating was impossible,” Achatz said. “Even drinking juice was difficult. It was tough.”

After 66 radiation treatments, Achatz ended his treatment. He had lost his hair and his weight went down to 128 pounds—50 pounds lighter than before the process began.

As he began to slowly recuperate, he noticed his sense of taste came back in waves—similar to an infant discovering flavors for the first time. First, he could taste the sugar in his coffee; soon, he could taste that it was bitter. A year and a half later, the chef could completely savor his food again.

Triumph and Awareness
Although today it is still difficult for him to swallow and his mouth is still extremely sensitive, Achatz continues to remain passionate about food and his work at Alinea. In addition, he has become dedicated to bringing awareness to oral cancer and co-wrote the book “Life on the Line,” with Nick Kokonas, his business partner and friend. The book chronicles Achatz’s struggle and triumph over the disease.

“This is why I’m public with my battle—it’s striking young people at this point,” Achatz said. “The more I can raise awareness, I think that’s positive.”