Understanding Tongue Cancer
- When Jamie Powell, a mom of two from California, first noticed a bump on her tongue, she thought it was from accidentally biting it and her dentist didn’t think it was anything. Months later, she discovered it was cancer. Now, after having part of her tongue removed, along with lymph nodes in her neck, and 30 rounds of radiation, she’s raising awareness for the disease.
- A mouth sore may be painful and inflamed from the start but heal within two or three weeks. On the other hand, a cancerous lump may not be painful in the early stages and it won’t get better over time.
- 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. It’s unclear whether Powell’s cancer was linked to HPV.
Now, 41, Powell is spreading tongue cancer awareness and sharing her journey, telling others how she undergoing a glossectomy [the surgical removal of part of the tongue], surgery to remove lymph nodes from the neck, and completing 30 rounds of head and neck radiation treatment.
Read More@jamieraepowell Reply to @shannahsosweet #greenscreen #tonguecancer #oralcancer #squamouscellcarcinoma #oralcancerawareness #gogetchecked #oralcare #knowthesigns ♬ original sound – Jamie
Powell ultimately chose to go to an urgent care to check the large bump on her tongue in January 2020. By February of that year, she had the concerning area on her tongue biopsied.
Despite the urgent care visit which lead to her diagnosis, Powell admits she was frustrated “not having anyone listen to me” in the months prior.
“I believe my tumor grew in those months,” Powell, who underwent surgery in March 2020.
Looking back on the “awful” experience she had enduring the side effect so treatment, she added, “The healing process is so frustrating; to this day, I have lifelong side effects I deal with every day.
“I don’t taste food, I can only eat soft foods, and my voice is different.”
@jamieraepowell Nope, not even close. Tongue cancer changes everything. The way you eat, the way you speak. I’m better today than I was 5 years ago, but I still can’t chew food properly 🤷♀️ #tonguecancer #cancersurvivor #headandneckcancer #lifeaftercancer #proteinshake
She further explained to People, “Radiation to the head and neck was so brutal. It left me with limited mobility in opening and closing my mouth.
“During the night, my jaw tightens and every morning I have to physically pry my mouth open and stretch it out to get movement. It’s become my 4 a.m. morning routine.”
Powell also expressed her determination to help others understand it’s normal to feel overwhelming emotions after a cancer diagnosis.
She concluded, “Most oral cancers are missed until it’s in the later stages. I’ve learned that no one should go through this alone. The more we talk about this cancer, the more help we can be to one another.”
More On HPV-Related Cancers
- Get the Facts: What Do We Know About HPV-Linked Throat Cancer?
- Having Oral Sex With Multiple Partners Can Increase Risk for Throat Cancer, Says New Study
- 6 Well-Known Figures Who Battled Throat Cancer, Including Eddie Van Halen, Val Kilmer, and Bob Denver
- 7 Signs of Throat Cancer That Aren’t As Obvious as You’d Think; Knowing What to Look for Is Key
- Majority of Throat Cancer Diagnoses Are Caused by HPV – Here’s What You Need to Know
Further showing how her incredible strength through her cancer journey, Powell often takes to TikTok and Instagram to offer insight into her journey.
Alongside a photo of her neck, looking very red and inflamed after radiation treatment, she wrote, “Radiation was brutal. If you have ever had your mouth radiated, it’s just almost too much to take.
“So glad I made it through. many times I want to quit.”
@jamieraepowell Radiation was brutal. If you have ever had your mouth radiated, it’s just almost too much to take. So glad I made it through. many times I want to quit. #tonguecancer #headandneckradiation #radiationtherapy #headandneckcancer #cancersurvivor
She continued to warn others, “If you have a bump or white patch on your tongue, cheek or gums, for more than 14 days, get it checked out.
“Early detection saves lives.”
@jamieraepowell If you have a bump or white patch on your tongue, cheek or gums, for more than 14 days, get it checked out. Early detection saves lives. #tonguecancer #oralcancer #cancerscreening #headandneckcancer
♬ New Flame (but I promise you) (feat. Usher & Rick Ross) – Chris Brown
Tongue Cancer: A Type of Head & Neck Cancer
According to Cedars-Sinai, several types of cancer develop in the tongue, with the most common being squamous cell carcinoma, the type of cancer Powell was diagnosed with.
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 out
- 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 include:
- Smoking [smokers are 5x more likely to develop tongue cancer than nonsmokers]
- Drinking alcohol
- Human papillomavirus (HPV)
African-American men also have a greater risk than caucasians.
Tongue cancer may be hard to spot in its early stages, however it’s important to be aware of the symptoms, as catching the disease earlier will lead to an easier treatment path.
Symptoms might 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
- Trouble swallowing
- Voice changes
- Pain in the ear
- Pain in the throat
- Feeling of fullness in the throat
HPV and Cancer Risk: The Basics
Throat cancer is usually diagnosed through X-rays, CT scans, and PET scans. A diagnosis also 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 at University Hospitals Seidman Cancer Center in Cleveland, Ohio, told SurvivorNet during a previous interview.
More On HPV-Related Cancers
- Get the Facts: What Do We Know About HPV-Linked Throat Cancer?
- Having Oral Sex With Multiple Partners Can Increase Risk for Throat Cancer, Says New Study
- 6 Well-Known Figures Who Battled Throat Cancer, Including Eddie Van Halen, Val Kilmer, and Bob Denver
- 7 Signs of Throat Cancer That Aren’t As Obvious as You’d Think; Knowing What to Look for Is Key
- Majority of Throat Cancer Diagnoses Are Caused by HPV – Here’s What You Need to Know
The vast majority of people 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% 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.
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
The Importance of Being Your Own Advocate
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.
Dr. Murrell told SurvivorNet that not every patient will “fit into the mold,” so it’s important to educate yourself and be your own health care advocate.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell advised. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Contributing: SurvivorNet Staff
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