I lost my tongue to cancer – I got a new one from my arm with a tattoo

A woman who lost her tongue to cancer had it rebuilt with flesh from her left arm – and has a tattoo on it.

Jennifer Alexander, 52, was 37 when she was first diagnosed with stage one tongue cancer.

For more than a decade ago she had recurrent leukoplakia – a painful white patch on her tongue caused by HPV.

But in August 2009, she developed a tumor the size of a cranberry and was rushed to a dentist, where she was given a biopsy.

After undergoing surgery on August 21, 2009 to remove the tumor, the cancer returned twice – in October 2017 and October 2019.

In March 2020, she opted to have tongue reconstruction surgery to prevent the tumor from growing – this involved removing a chunk of flesh from her left arm and sewing it to the rest of her tongue.

Now, her “tongue” is a piece of flesh with a tattoo of a blue star on it, as shown on her left bicep.

Jennifer lost 60 percent of her taste and had to learn to speak, sing and eat again.

Jennifer, a tax accountant, from Marietta, Atlanta, USA, said: “I know I don’t look like the person with a mouth tattoo – but I love using it to educate people about tongue cancer.

“After my fourth surgery in March 2020, I can’t even say my name until 2022.

“I had to visit a speech therapist to learn to eat and speak again.

“I lost 60 percent 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.

Jennifer’s leukoplakia started in her early 20s.

She had a large white patch on her tongue and felt a burning sensation if she touched any food or drink.

Despite knowing she had to keep an eye on it, Jennifer says she “lived in denial” when the patch turned into a tumor in 2009.

She ignored him for weeks – until her aunt, Anne, then 60, insisted she take Jennifer to the dentist.

“He took one look at me and, while he didn’t want me to worry, he said he thought it was cancer,” she said.

“He called the ENT specialist and got everything ready for a diagnosis then and there.

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

Jennifer had a biopsy that confirmed she had stage one tongue cancer – caused by HPV, her doctors confirmed.

Because of early intervention by doctors, the only treatment she needed was surgery to remove as much of the tumor as possible – and she never needed chemotherapy or radiotherapy.

On August 21, 2009, doctors managed to capture part of the tumor.

But the disease returned twice in 2017 and 2019.

Jennifer said: “They weren’t removing enough – it was a bad cell that kept reproducing.

“On my third operation, I was angry because I didn’t want to be the poster child for cancer.

“I decided to do things differently, and chose to have half of my tongue cut out and reconstructed.

“I was told I would lose a dramatic amount of weight afterwards – because I couldn’t eat.

“I wasn’t freaked out about it – I felt like I needed to lose some weight anyway.”

Up until Jennifer’s surgery in March 2020, she gained 10 pounds, but says she lost 70 pounds afterward — because she was able to live on protein alone.

She was told the surgeon would take a piece of flesh from her left arm to reconstruct the tongue – as she is right-handed.

Despite this, she didn’t feel insecure about it and was excited to “get her life back”.

“I went three months without eating or talking,” she said.

“I had speech therapy to learn how to speak again.

“I had to stick out my tongue and put it in my mouth.

“I worked with a nutritionist to maximize my diet – I didn’t want a tube so I lived on protein.

“I had to retrain my jaw to chew again by practicing.

“Now, I can manage smaller foods like carrots and olives.”

Jennifer says the best therapy for her speech was practicing singing her favorite Miranda Lambert song – ‘Settling Down’.

Her new “tongue tattoo” has gotten her into some trouble in the past — including being pulled over by an officer who thought the tattoo was a Listerine tab.

“Nothing about it bothers me,” Jennifer said.

“I was much more insecure when my tongue was smarter.”

Jennifer’s main goal is to educate people under 40 about tongue cancer – including the symptoms to watch out for.

She said, “I’ll take care of any white spots.

“If you’re not doing something to lose weight, there’s a problem.

“If you’re not exercising and eating better and you just lose 30 pounds for ‘no reason’ – there’s a reason.

“Watch out for a bloody mouth, jaw pain – if you have HPV, go for your annual checkup.

“Stay on top of those appointments.”