Published Aug 20, 2024

Georgia Woman, 37, Lost Tongue To Cancer After Discovering Blueberry-Sized Tumor— Doctors Later Reconstructed It With Tattooed Flesh From Her Arm

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Learning About Tongue Cancer

Jennifer Alexandra, now 52, is sharing her stage one tongue cancer story to help encourage those under 40 to pay attention to symptoms and seek help when needed as she previously needed to have her tongue reconstructed after a blueberry-sized tumor was discovered in her mouth.
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.
In Jennifer Alexander’s case, her tongue cancer was caused by HPV.

Jennifer Alexandra, from Atlanta, Georgia, was 37 years old when she was diagnosed with tongue cancer and needed to have her tongue removed after doctors discovered a blueberry-sized tumor in her mouth.

Now, as she’s 52 and living with a tongue reconstructed from tattooed skin on her arm, Jennifer is sharing her story to help inspire others not to ignore their symptoms as she had previously dealt with something called recurring leukoplakia, something which causes discolored patches in one’s mouth due to the human papillomavirus virus (HPV), the most common sexually transmitted infection in the United States.

Jennifer spoke with SWNS in a recent interview, according to the New York Post, revealing she suffered from leukoplakia, a mouth condition, for 10 years prior to her 2009 cancer diagnosis.

Her cancer was found after a tumor, the size a of a blueberry, appeared inside her mouth. Despite having the growth removed twice, in 2017 and 2019, the small mass would regrow, ultimately prompted her doctor to decide she should have her tongue removed.

By March 2020, Jennifer chose to have her tongue removed and reconstructed to prevent cancer recurrence. In doing so, the doctor used part of her flesh from her left arm to attached it the remaining part of her tongue.

Since her arm had a tattoo of a blue star on the inside of her wrist, she now has that tattoo on her new tongue, following a surgery that left her with only 60 percent of her taste buds.

Jennifer underwent a 10-hour surgery on March 3, 2020 to “completely reconstruct her tongue.”

On her GoFundMe and CaringBridge pages set up for her, it is explained, “In this ground breaking surgery, the doctors will take skin and tissue from her left arm to replace the tongue tissue they will remove.

“Jennifer is lucky. They only need to remove about 25% of her tongue. She will go through speech therapy and should be able to speak and eat normally.”

“I know I don’t look like the kind of person who has a mouth tattoo – but I like to use it to educate people about tongue cancer,” Jennifer told SWNS. “After my fourth surgery in March 2020, I couldn’t even say my own name until 2022.”

She continued, “I had to see a speech therapist to learn to eat and speak again. I’ve lost 60 per cent of my taste. Sometimes, with food like ice cream, I have to wait for my brain to send the ‘cold’ signal before I can register what it is.”

Prior to being diagnosed with cancer, Jennifer described having a big white spot on her tongue, which burned when liquid or food came in contact with it.

However, she admits to living “in denial” for years, starting in her 20s, prior to her diagnosis.

It wasn’t until her aunt urged her to see a doctor that she decided to get checked.

Jennifer recounted, as per the New York Post, “He took one look at me and, while he didn’t want me to worry, said he thought it was cancer. He called the ENT specialist and got everything ready for a diagnosis there-and-then.

“He said, ‘You’re going to be fine, but I’m telling you now, this is definitely cancer.'”

Thankfully, Jennifer only needed surgery to get rid of the cancer, which her doctors said was due to the HPV virus, since it was found early.

Looking back on who she had the growth on her tongue removed twice, only for it to grow back, she said, “I decided to do things differently, and opted to have half of my tongue cut out and reconstructed.

“I was told I’d lose a dramatic amount of weight afterwards – due to not being able to eat. I wasn’t scared about that. I felt like I needed to lose a bit of weight anyway.”

Following the reconstruction surgery, Jennifer endured three months without being able to eat normally or speak. She underwent speak therapy, do mouth exercises with her tongue, work with a nutritionist, and practice chewing.

As for how her new “tongue tattoo” looks, she admits, “Nothing about it bothers me. I was way more insecure when my tongue was more f***ed up looking.”

She hopes her story with encourage those under age 40 to get checked sooner than later, concluding, “I would look out for any white patches. If you’re not doing something to lose weight, there’s a problem.

“If you’re not working out and eating better and you just lose 30lbs for ‘no reason’ there’s a reason. Look out for a bloody mouth, jaw pain – if you have HPV, go for your yearly check-up. Stay on top of those appointments.”

What Causes Tongue Cancer?

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 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, per Cedars-Sinai include:

Smoking and drinking alcohol (smokers are 5x more likely to develop tongue cancer than nonsmokers)
Human papillomavirus (HPV)
Race (Black men have a greater risk than caucasians)

Additionally, 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.

As for how throat/tongue 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.

Understanding the Connection Between Head & Neck Cancers and HPV

It’s much more common to know someone who has a head or neck cancer now-a-days than it was several decades ago. And that’s because of its strong connection to HPV, 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.

“That is entirely due to the HPV infection, in the throats of patients who have been exposed to HPV. So there is no myth … HPV causes throat cancer and it’s a sexually transmitted disease. And it’s something that is an epidemic in the United States.”

Understanding HPV and Cancer Risk

Meanwhile, Dr. Allen Ho, a head and neck surgeon at Cedars-Sinai, says the vast majority of humans in the United States — both men and women — will eventually get infected with HPV.

Dr. Ho explained, “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.

“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 throat or mouth cancer, or whether this happens in combination with other risk factors like smoking. Of course, some people who develop throat or mouth cancers have no known risk factors for the condition. Genetics can play a role in this cancer, too.

Why the HPV Vaccine is so Important in Preventing Cancer

The HPV Vaccine

Throat and oral cancers are unique in that they’re usually preventable with the HPV vaccine. And that’s why those eligible should get vaccinated against HPV, SurvivorNet experts say.

The vaccine is typically given to children before they are sexually active, as HPV is transmitted through sexual contact.

And contrary to some detrimental misinformation circulated online, the HPV vaccine is entirely safe.

There are virtually no side effects with this vaccine, Dr. Jonathan Berek, director of the Women’s Cancer Center at Stanford Medical Center, previously told SurvivorNet.

It is “incredibly safe,” he insisted. “It’s as safe as any vaccine has ever been. It’s highly-effective. It’s highly-predictive.”

Dr. Berek continued, “Some people say they’re concerned about it because they’re — they’ve called it a sex vaccine, that somehow it’s gonna encourage people to be sexually active. First of all, that’s not true. It’s, it’s an anti-cancer vaccine. And second of all, there are no data to support that contention.

“There are absolutely none. So it’s really based on fear, misinformation, disinformation … it’s not based on science or data. The science is very clear. It’s a highly-effective, safe vaccine, and should be promoted. And in those countries now where it has been promoted, we’re starting to see substantial reductions in the precancerous and early cancers of the cervix.”

HPV is responsible for 34,800 cases of cancer in the U.S. each year, but 90% of them can be prevented thanks to the HPV vaccine Gardasil.