When Jamie Powell woke up one morning in late 2019 with a painful bump on her tongue, she assumed she had bitten it in her sleep.

Random bumps on the tongue generally heal on their own within a few days, but the one on Powell’s stayed firm for two weeks.

Peering into the mirror to inspect her tongue, Powell noticed a raised piece of tissue, as if a square stamp had left its imprint there. Further back, closer to the side of her teeth, was the problematic bump, sizable and nearly touching the interior of her teeth.

While her dentist assured her that the issue would resolve on its own, Powell—who was 36, in good health, and a nonsmoker—wasn’t considered a cancer risk. However, despite the passage of weeks, the bump persisted.

In January 2020, Powell visited an urgent care facility, where the doctor recommended she see an ear, nose, and throat specialist. The specialist carried out a biopsy on the bump.

A week went by in silence until Powell got the news that the bump was cancerous, and it had spread to her lymph nodes. 

Her diagnosis kicked off what she considers to be the most ‘morbid’ period of her life, starting with a tongue resection surgery and 30 grueling radiation treatments that she often wished she could quit early because the pain was so great. 

Tongue cancer accounts for less than one percent of all new cancer cases in the US every year. Around 20,000 cases and 3,200 deaths are confirmed annually.

Thirty-six at the time, fit, healthy, and a nonsmoker, Jamie Powell was not a high risk for cancer. Neither she nor her dentist could believe that the obtrusive bump on the side of her tongue could be a cancerous mass

While the rate of deaths due to tongue cancer has remained about the same for about two decades, the patient profile of new cases of tongue cancer is beginning to shift from primarily older male smokers to women and younger healthy adults.

Oral cancers usually spread quickly if left untreated, and Powell is confident that hers was allowed to grow unchecked when she was sent home from her dentist’s office over five years ago.

‘It was scary and frustrating not to know what was going on and not having anyone listen to me,’ she told People.

Powell had a section of her tongue surgically removed on March 23, 2020, just as Covid was getting its grip on the world. Doctors reconstructed it using tissue taken from her thigh.

‘I remember the surgeon describing the surgery to me. I was just numb, and I heard him say that my voice will be different,’ she said. ‘I instantly thought of my kids. How will I sing to them? How will I tell them how much I love them?’

She then had all of the lymph nodes removed on her left side to stop the spread of the cancer in its tracks.

‘I couldn’t talk or eat. I had a feeding tube and I used my iPad to communicate to the doctors and nurses,’ Powell said.

She also had to endure six weeks of radiation treatments.

Powell had a section of her tongue surgically removed on March 23, 2020, just as Covid was getting its grip on the world

With her head encased in a mesh mask that is bolted to a radiation table to ensure complete stillness, Powell suffered sunburn-like charred skin on her neck, blisters on her lips, and painful ulcers in her mouth.

Off the table, she was fatigued, nauseous, and had lost her sense of taste, so everything tasted of either wet cardboard or sewage. She also no longer had working salivary glands, resulting in a constant dry mouth.

‘I’d rather do surgery every single day than go through head and neck radiation again,’ Jamie, now 41, said.

She lost her ability to speak by week three of radiation, her mouth essentially one big canker sore. 

After surgery, she had to retrain her brain to form sounds and piece them into words. She still has trouble with words starting with ‘sh’ and ‘ch’.

Eating without salivary glands requires her to sip water after every bite. And if she has a dinner date with friends, she has to decide ahead of time whether she will eat or talk. She can no longer do both.

At bedtime, she does not recline. Instead, she sits back as if in an airplane seat, propped against acupressure pillows.

‘Think about when you’re sleeping and you wake up and your mouth is dry. I have that 24/7, and it’s heightened to the next exponent at night. So I have to sleep sitting up no matter what,’ she said.

Radiation treatments led to irritated sun burned-like skin on her neck, sores in her mouth, and blisters around her lips

‘And I wake up every hour from choking because of the dry mouth, so I take a drink of water, and I also have a spray bottle, and I will spray the inside of my mouth, like how you water your house plant.’

Every morning, at four am, she has to pry her jaw open with both hands and use the handle of a spoon to prop her mouth open so that she can stretch it out.

‘For months after radiation, I couldn’t taste anything, then one morning I made my coffee and I could actually taste it – I cried,’ she said.

Powell began documenting her experience on TikTok when she realized there were no other creators like her on the site.

Tongue cancer is rare, but federal tracking indicates it is becoming more common. 

Rates of new cases have risen about 49 percent since 1992, according to the National Cancer Institute.

Cases are becoming increasingly common in women and young people, which scientists believe are tied to human papillomavirus.

About 70 percent of oropharyngeal cancers affecting the tonsils, base of the tongue, soft palate, and throat are linked to HPV, yet only 61 percent of US teens are fully vaccinated against the virus, which requires two or three doses. 

The death rate due to tongue cancer has remained steady for decades, but case rates are ticking up in part, scientists believe, due to human papillomavirus

Over 42 million Americans carry HPV, a virus that causes genital warts and cancers like cervical, throat, and anal malignancies, with 47,000 new HPV-related cancer cases diagnosed yearly. Despite this, public awareness of HPV’s cancer risks is declining, even as vaccination remains a critical defense. 

‘Most oral cancers are missed until it’s in the later stages,’ Powell said. ‘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.’

The Head & Neck Cancer Alliance has many free programs and resources for head and and neck cancer patients. 

Anyone concerned about head and neck cancer can find the symptoms, risk factors, and guides on how to do a self exam on their website, HeadandNeck.org.