- Cameron Newson, 42, was diagnosed with advanced tongue cancer in 2013 after years of strange spots.
- She underwent chemo, radiation, and a partial tongue removal to treat the cancer.
- Half of her tongue was replaced with thigh tissue, which can't taste and feels "tingly and numb."
A 42-year-old Colorado mom is opening up — literally — about life with half a real tongue.
Cameron Newsom, who goes by Camiflauge on TikTok, needed part of her tongue removed to fight a rare cancer in 2013.
It's since been replaced with tissue from her thigh, which helps her talk and keep from choking, but still has drawbacks like slowing her eating, inhibiting "a really good kiss," and slurring her speech, she said on TikTok.
Newsom is grateful, though, to be a cancer survivor of nine years. "The longer you go without regressing, the less likely it is the cancer will come back, so were all feeling really positive," she told The Sun.
It took three years for Newsom to get diagnosed
Newsom's first symptom was a painless white spot on her tongue, which turned up negative for cancer in a biopsy. A year later, another spot developed, but more invasive testing didn't find anything concerning.
When her tongue became so sensitive and painful she could barely eat, drink or talk, Newsom's dentist prescribed antibiotics. Her pain only got worse, and a pinkish tumor developed.
Finally, after a third biopsy, an ear, nose, and throat specialist diagnosed her with stage four squamous cell carcinoma, the most advanced stage of disease, in May 2013.
"When I was told, it seemed like I was being handed a death sentence there and then, but straight away my reaction was: I'm ready to fight this," she told The Sun. When she googled her condition, "There were images of people after having their jaws removed or sawed in half — I'd never been so scared."
Newsom underwent chemo and radiation in addition to tongue surgery
Newsom underwent three rounds of chemotherapy, which were successful but miserable, she said. "There would be times at the dinner table where I would just burst into tears because I couldn't eat a thing," she told The Sun.
She eventually couldn't even speak to her husband and then five-year-old son.
After the therapy shrunk her tumor enough, Newson flew to MD Anderson Cancer Center in Houston, Texas, for a nine-and-a-half-hour surgery to remove the left side of her tongue and replace it with thigh tissue.
Recovery was brutal, as Newsom couldn't swallow or breathe on her own. She was constantly monitored by hospital staff, who frequently had to flush out the buildup of fluids in her throat. "That was basically like being waterboarded by the nurses once or twice a day, which was absolutely horrific," she said.
"The weirdest part of the whole experience was when I felt a rough texture on the thigh part of my tongue — and when I looked in the mirror, it had started growing leg hair," she added.
Nine weeks later, Newsom still wasn't done with treatment. She underwent 45 rounds of radiation and three more rounds of chemo to kill any remaining cancer cells. She used a feeding tube for six months.
Eventually, Newsom relearned how to speak, eat, and drink with her new tongue
Newsom can only taste and chew on her right side.
She said the thigh half of her tongue feels like "having a dead arm or dead leg all the time — it is constantly tingly and numb."
But she's grateful to be alive, and was able to resume her job as a gymnastics coach just over a year after her diagnosis. "2013 was the toughest year of my life," she said, "and I couldn't have done it without the support of my amazing [husband] and the rest of my family."
Newsom isn't the only person with a tongue made from thigh tissue
In 2020, Annabel Lovick, a 48-year-old in the UK, was diagnosed with tongue cancer. In a 10-hour surgery, doctors removed a third of her tongue and replaced it with thigh tissue. A year later, she still couldn't fully stick out her tongue, lick her lips, kiss, eat or swallow, but was improving, the Daily Mail reported.
In 2017, doctors discovered a tumor covering more than half of Cynthia Zamora's tongue. As part of her treatment, that part of her tongue was removed in a 12-hour surgery and replaced with skin and fat from her thigh. She had to relearn how to speak, eat, drink, and sing.
"I'm doing great. There is life after this surgery," she told UC San Diego Health, where she was treated. "Don't give up. Keep going. Be strong. Be stubborn. You can do it, you can."