Learning About Tongue Cancer
- It’s been 17 years since American chef and restauranteur Grant Achatz was diagnosed with stage 4 tongue cancer. Now, 51, he has since beaten the disease and reflected on how his “determination and grit” helped him cope with temporarily losing his of taste after radiation and chemotherapy treatments.
- Tongue cancer doesn’t always show signs, but symptoms can include: a lump on the side of the tongue that touches the teeth, pain, a sense of fullness in the throat, difficulty swallowing, the feeling of a lump in the neck or throat, voice changes and ear pain.
- Tongue cancer is more commonly found in people older than 40. In addition, tongue cancer is twice as common in men, and smokers are five times more likely to develop tongue cancer than nonsmokers.
- It’s much more common to know someone who has a head or neck cancer, like tongue cancer, nowadays than it was several decades ago. And that’s because of its strong connection to HPV, which is the most common sexually transmitted infection in the United States. However, it’s unclear what led to Achatz’ diagnosis.
The Michigan native was diagnosed with tongue cancer in 2007, after four years of noticing a white dot on his tongue, which was revealed to be a tumor. The cancer was also found to have spread to his lymph nodes around his neck.
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Achatz told People, “I was like, if I can’t taste and I can’t talk, how can I be a chef? If I wasn’t able to do that passion that I’ve loved for so long, I really felt like I didn’t have a purpose.
“They never knew if my taste would come back, and they didn’t really know if I was going to live. So when you face those situations, it’s really just a big, let’s wait and see.”
As for how he endured a life without taste, he continued, “You have to navigate your way through that. It’s about determination and grit. I just went to work every day. That was my safe place. That was where I was most comfortable and that’s what I loved.
“As time goes by and the doctors tell you that it seems like the tumor is not coming back, then you start to ease your mind. But it was still a year and a half without the ability to taste or smell.
Recounting his cancer journey to Medium in a recent interview, Achatz, who was dubbed cancer-free about one year after treatment began and slowly regained his senses, said, “I was on top of the world. All of my childhood dreams were coming true. It felt like we were an unstoppable force in the industry, and we were innovating creatively every single day.
“For the five years prior [to his 2007 diagnosis], I had felt this little white dot on the side of my tongue. I went to several dentists, and they all said the same thing: you’re working 15 hours a day, you have two young children, you’re stressed, you’re probably just biting your tongue. That went on for five years. Unbeknownst to me, the tumor continued to grow without anyone recognizing it.”
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He continued, “Finally, it was just so persistent that instead of going to a dentist, I went to an oral surgeon. They biopsied it and diagnosed me with cancer.
“At that point, I was 33 years old. I’d never had a cigarette in my mouth, I wasn’t a drinker, and honestly, I was kind of a cancer idiot. I didn’t even know there were four stages. I started treatment for stage 4B cancer. It was incredibly aggressive radiation and chemotherapy. Within five weeks, I lost my ability to taste completely — it was just gone.”
More On HPV-Related Cancers
- Don’t be Swayed by Myths: The HPV Vaccine is Completely Safe
- Get the Facts: What Do We Know About HPV-Linked Throat Cancer?
- Majority of Throat Cancer Diagnoses Are Caused by HPV – Here’s What You Need to Know
- New Evidence Suggests Benefit Of Keytruda Immunotherapy For Some Head And Neck Cancer Patients
- 7 Signs of Throat Cancer That Aren’t As Obvious as You’d Think; Knowing What to Look for Is Key
- 6 Well-Known Figures Who Battled Throat Cancer, Including Eddie Van Halen, Val Kilmer, and Bob Denver
- Having Oral Sex With Multiple Partners Can Increase Risk for Throat Cancer, Says New Study
As for how he coped with losing his sense of taste, which has since slowly returned, during his cancer fight, he admitted to Medium it “was very difficult at first, for obvious reasons.”
Achatz explained further, “It was really jarring. Honestly, I didn’t know if my colleagues and the guests at the restaurant would trust me. The basic, fundamental skill for a chef is to be able to discern taste.
“So, I had to learn how to trust fully. That meant essentially having people taste for me, which is a very unusual process. But by digging deep into my creative side, I decided I just had to push forward with ideas and hope my ability to taste would come back. At that point, the doctors couldn’t tell me whether it would or not. Some people never regain it, and some people like me ultimately do.”
He continued, “It was about them trusting me to come up with ideas and show up every day, and in return, they gave me honest feedback, commitment, and dedication.
“It was a struggle, but it made me a better chef and a better person. I wouldn’t recommend it to people as a way to grow, but ultimately, it had a powerful and positive outcome.”
He also noted how losing his sense of taste made him realize how eating was connected to “enjoyment and satisfaction,” adding, “Once that’s gone, it’s odd. You still need food to live, but the desire to eat disappears. When you’re dealing with that, there’s a whole list of personal, internal, and social challenges you have to overcome.”
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Tongue Cancer: Understanding the Cause of Head & Neck Cancers
According to Cedars-Sinai, several types of cancer develop in the tongue, with the most common being squamous cell carcinoma. The two types of tongue cancer are:
- Cancer of the oral tongue, which consists of the front two-thirds of the tongue that you can stick.
- Cancer of the base of the tongue, the area which is the back one-third of the tongue that extends down the throat.
Although some people may be diagnosed with tongue cancer and have no risk factors, Cedars-Sinai says this type of cancer is most commonly found in adults 40 years old and up. Men are also twice as likely to be diagnosed with tongue cancer.
Other risk factors, as per Cedars-Sinai include:
- Smoking and drinking alcohol [smokers are 5x more likely to develop tongue cancer than nonsmokers]
- Human papillomavirus (HPV)
- African-American men have a greater risk than caucasians
It’s unclear what led to Achatz’s diagnosis, but it’s important to understand that symptoms of tongue cancer can include:
- An unusual lump on the side of the tongue
- An ulcer-like lump, of a grayish-pink to red color
- A lump that bleeds easily when touched
Tongue cancer may be hard to spot in its early stages, however, when the cancer develops, patients may experience trouble with swallowing, voice changes, pain in the ear, pain in the throat, or a feeling of fullness in the throat.
HPV and Cancer Risk: The Basics
As for how throat cancer is diagnosed, it’s usually done through X-rays, CT scans, and PET scans. A diagnosis often requires a biopsy.
For tongue cancer treatment, surgery, chemotherapy and radiation therapy are usually done.
It’s much more common to know someone who has a head or neck cancer, like tongue cancer, now-a-days than it was several decades ago. And that’s because of its strong connection to the human papillomavirus, also known as HPV, which is the most common sexually transmitted infection in the United States.
“From the 1980s to the 2010s, the rate of HPV-related head and neck cancers has gone up by 300 percent,” Dr. Ted Teknos, a head and neck cancer specialist, and president and scientific director of University Hospitals Seidman Cancer Center in Cleveland, Ohio, told SurvivorNet during a previous interview.
The vast majority of humans in the United States both men and women will eventually get infected with HPV, according to Dr. Allen Ho, a head and neck surgeon at Cedars-Sinai.
“The important thing to know about HPV is that there are many different strains, and only a couple of them tend to be more cancer-inducing,” he told SurvivorNet.
“Probably less than 1 percent of the population who get infected happen to have the cancer-causing virus that somehow their immune system fails to clear, and over 15 to 20 years it develops from a viral infection into a tumor, and a cancer.”
It’s unclear whether HPV alone is enough to trigger the changes in your cells that lead to head and neck cancers, or whether this happens in combination with other risk factors like smoking.
Coping With Chemotherapy Side Effects
There are a lot of myths about how chemotherapy impacts people’s lives. It’s sometimes assumed that while undergoing chemotherapy you’ll be restricted to your home, and unable to move around but the opposite is actually true, says Dr. Marleen Meyers an oncologist at NYU Perlmutter Cancer Center.
Many people can continue to work and Dr. Meyers encourages her patients to exercise, even if it’s just a walk. It can make a huge difference when dealing with fatigue, a common side effect of chemotherapy.
How to Deal With the Side Effects of Chemotherapy
There are also treatments to help with the side effects of chemotherapy. Many medications are available for treating nausea and vomiting as well as anemia.
Other side effects like hot flashes, night sweats, and insomnia may be able to be managed with integrative medicine, like mindfulness, yoga, and acupuncture.
Meanwhile, it’s important to understand that while undergoing chemotherapy, the main diet goal is to maintain weight.
Krista Maruschak, a registered dietician at the Cleveland Clinic, previously told SurvivorNet that eating six smaller meals a day and packing some extra calories and proteins into these meals when possible can make a big difference.
How to Maintain a Healthy Diet During Chemotherapy
Extra calories doesn’t mean you should have a bag of potato chips with every meal. Things like nuts, dairy products, olive oil, avocados, and hummus are all healthy fats that will do the trick.
Dr. Lawrence Piro, an oncology specialist affiliated with Cedars-Sinai Marina del Rey Hospital, previously told SurvivorNet, “Chemotherapy affects the body by inhibiting cancer cells from dividing. But of course, it also inhibits normal cells from dividing. So, its side effects can be, in some cases, hair loss, in some cases mouth sores from affecting the lining of the mouth, of the stomach. Nausea, sometimes vomiting.”
Communicating With Your Doctor During Chemotherapy
However, the most significant side effect is the risk of infection because chemotherapy tends to lower the number of blood cells.
“It lowers your white blood cells, which puts you at risk for infection. It lowers the red blood cells, which makes you anemic. And it lowers the small platelets fragments of cells that are important in blood clotting, and that could give you a risk for bleeding,” says Dr. Piro.
For Dr. Erin Crane, an oncologist at Levine Cancer Institute Morehead in North Carolina, preparing patients for the likely side effects of their chemotherapy treatment plays a significant part in her approach to cancer care.
“I think the biggest part of our jobs, whether it be from cancer diagnosis to counseling patients, is to reassure them that they’ll get through it and they’ll be okay,” says Dr. Crane. “So a big part of what I do when I talk to patients about the side effects and explain to them that many of the fears they have about the side effects of chemotherapy are manageable.”
That means telling them that medication can treat the nausea and vomiting and assuring them that their fatigue will eventually go away.
Treating and Preventing Chemotherapy Side Effects
“I do counsel patients that fatigue is one of the side effects that tend to get progressively harder to recover from with chemotherapy,” says Dr. Crane. “But once chemotherapy is over, within a few months, most patients regain their energy levels back.”
There are also steps patients can take, says Dr. Crane, who notes that being active can make a world of difference.
“I think it’s important for patients to try and remain as active as possible,” she says. “And I know that of course, they don’t want to push themselves until they’re not feeling well, but trying to incorporate physical activity like going for a walk every day, doing things around the house to remain active really can help combat some of that fatigue and keep patients in better shape so that they’re better able to recover from chemotherapy and get back to normal when they’re done with treatment.”
Contributing: SurvivorNet Staff
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