Doctors blamed Nicola’s ‘nagging toothache’ on a sinus infection – it stole her smile, half her face and her life
INNOCENT SIGNS
'I love horror movies and this is what I imagine being in a horror movie would be like,' Nicole says
- Isabel Shaw, Health reporter
WHEN Nicole Kowalski-Kleinsasser first began experiencing a nagging toothache doctors passed it off as a run-of-the-mill sinus infection.
Little did she know, it was the first sign of an aggressive cancer that would eventually take her smile, her face, and - years later - her life.
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In 2017, when she was 25, the seemingly innocuous symptoms began - a dull tooth and jaw pain that wouldn't go away.
At first, dentists and doctors couldn’t find anything wrong.
Nicole who was living Nevada, US, was told it might be muscle strain or a sinus issue and was given antibiotics that did nothing.
Eventually, dental x-rays revealed bone loss in her jaw.
She was referred to a surgeon who found a mass near a molar and ordered a biopsy.
The procedure was traumatic as the numbing agent failed, and Nicole felt every painful tug as the surgeon removed her tooth.
“I’ve never felt pain like that in my life,” she said in a viral TikTok video.
“I could feel every single thing that he was doing," she said.
"At this point I’m yelling with my mouth open, I’m bawling and crying and he’s not stopping.
"I love horror movies and this is what I imagine being in a horror movie would be like.”
The initial biopsy came back negative, but the tumour was removed.
This time, tests confirmed salivary gland cancer.
Nicole faced 30 days of radiotherapy, which she described as “next level painful.
“It’s burning your skin,” she said.
“My burns were inside my mouth and I usually equate it to swallowing acid or glass.
"It was excruciating pain, and I was incredibly tired.
"There was a period of time during the first round that I just don’t know. I lost a week.”
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She was fitted with a prosthesis called an obturator to close the hole in her mouth and help her speak, eat, and drink.
Held in place by wires and delicate fittings, it was painful and needed constant adjustments.
Nicole recovered from surgery, but pain was constant.
Her teeth began shifting, which she found deeply distressing.
“I lost my smile,” she said.
“I’ve had this smile all my life. And it’s just gone. It was a really devastating experience to have that happen, to have them shift like that.”
Doctors believed necrosis — the death of tissue — was to blame.
But a biopsy revealed the cancer had returned, forcing Nicole to undergo another operation removing more of her mouth and seven teeth.
After a second round of radiotherapy, she was cancer-free and resumed a normal life.
She pursued a master’s degree, then a doctorate in psychology.
DENTISTS often spot signs of mouth cancer during routine check-ups.
But appointments are becoming increasingly difficult to get, so thousands of Brits may be living with the disease and have no idea.
A simple self-examination, which you can do at home, could save your life. Here, are 10 signs of mouth cancer to look out for.
1. Persistent ulcers
2. Red or white patches
3. Lumps
4. Painful areas
5. Difficulty swallowing
6. Croaky voice
7. Bad breath
8. Wobbly teeth
9. Earache
10. Weight loss
Nicole exercised, spent time with family and friends, and met Eric Kleinsasser, who she married and described as the love of her life.
Eric said: “Nicole had this joy for everyday life that was contagious. It’s one of the first things I fell in love with.
"She was constantly learning, constantly growing.”
In April 2022, after two healthy years, the cancer returned again.
Doctors removed part of the outside of her face and rebuilt it with skin grafts from her leg.
Nicole found this hard - she had only just become comfortable with her appearance after previous surgeries.
Financial and insurance issues added to the stress.
“It wasn’t just stressful, it was dehumanising," her husband added.
Nicole became an advocate, sharing her story on TikTok as @nicolescrookedsmile.
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"She didn't always feel strong," Eric said.
"She’d say, ‘This doesn’t feel like courage. It just is.’ But to me — to everyone — she was the embodiment of it.”
Nicole died on January 23 at UCLA Santa Monica, aged 33.
Eric said: “Nicole is the most beautiful person I will ever know. She taught me to see beauty in places I never thought to look.
"She lived forward, always.
"And she didn’t just survive.
"Even when she was in unbearable pain, she was thinking about how to make others feel less alone.
"Even when she was in unbearable pain, she was thinking about how to make others feel less alone.”
“Nicole gave everything she had to this fight. Now it’s our turn to carry her voice.”
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