When a nagging pain keeps you up at night, most of us chalk it up to something minor—a sinus infection, a toothache, maybe just the winter blues.
That’s exactly what Nicole Kowalski-Kleinsasser, a vibrant 25-year-old, thought when she first felt a persistent ache in her upper right jaw.
But what began as a seemingly harmless annoyance would spiral into a devastating journey, one that would test her courage, resilience, and ultimately, her very identity.
A mystery pain dismissed
Nicole’s story is a sobering reminder of how easily serious health issues can be overlooked, even by professionals.
When she first visited her dentist in 2017, she expected a routine fix for what she assumed was a dental problem. But her teeth were healthy, and the pain remained a mystery.
Doctors suggested muscle strain or a sinus infection—a common enough diagnosis during the colder months. Antibiotics were prescribed, but they did nothing to ease her discomfort.
It wasn’t until Nicole returned for an X-ray that the true culprit was revealed: a tumour lurking in her face, quietly growing and causing havoc.
The diagnosis? Salivary gland cancer—a rare and insidious disease that affects the tissues responsible for producing saliva.
In the UK, only about 720 people are diagnosed with this cancer each year, and it’s even less common in young adults like Nicole.
A battle like no other
The journey from diagnosis to treatment was harrowing. Nicole underwent a procedure to remove the mass, but the experience was nothing short of traumatic. The anaesthetic failed, leaving her to endure excruciating pain as surgeons worked.
‘I’ve never felt pain like that in my life,’ she recalled. ‘I could feel every single thing that he was doing. I love horror movies and this is what I imagine being in a horror movie would be like.’
Surgeons removed four teeth and part of the roof of her mouth. Initial tests suggested the tumour was benign, but further analysis confirmed the worst: it was cancer.
Nicole faced 30 days of intense radiotherapy, describing the sensation as ‘burning’ and likening the pain to ‘swallowing acid or glass.’
The treatment left her with severe burns inside her mouth and a gaping hole that required a prosthetic device called an obturator just to speak, eat, and drink.
Losing—and finding—her smile
The physical toll was immense, but the emotional impact was just as profound. As Nicole recovered, she noticed her remaining teeth shifting, her once-familiar smile disappearing.
‘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.’
Doctors initially suspected tissue death (necrosis) from the surgery, but tests revealed a more sinister cause: the cancer had returned.
Another round of brutal treatment followed, costing Nicole seven more teeth and the entire roof of her mouth. She relied on multiple obturators to perform basic tasks, but through it all, she persevered.
A life rebuilt—and a love story
Despite these unimaginable challenges, Nicole refused to let cancer define her. Living in Nevada, in the US, she completed a master’s degree, then a doctorate in psychology.
She met and married Eric Kleinsasser, who was drawn to her infectious joy and deep empathy. ‘Nicole had this joy for everyday life that was contagious,’ Eric said.
‘She was fascinated by people and wanted to understand others, not judge them.’
For a time, Nicole was declared cancer-free. She shared her journey openly on social media, inspiring thousands with her honesty and humour, even as she navigated the daily realities of living with a facial prosthesis.
The final battle
But in April 2022, two years after her last cancer scare, the disease returned for a third and final time. This time, it was even more aggressive.
Surgeons were forced to remove part of the outside of her face, using skin grafts from her leg to cover the wounds.
The physical changes were devastating, especially after Nicole had worked so hard to accept her new appearance.
‘It wasn’t just stressful, it was dehumanising,’ Eric recalled. Yet Nicole’s courage never wavered. Even in her darkest moments, she thought of others, sharing her story to help those who felt alone in their struggles.
Nicole passed away in January 2024, aged just 33. Her mother and husband paid tribute to her indomitable spirit.
‘She did not lose. She did not fail,’ her mother wrote. ‘She walked through every battle with grace and determination and through it all, she smiled, never asked for pity or blamed anyone for her illness. Life will never be as bright as it was without that crooked smile.’
Eric added, ‘Nicole gave everything she had to this fight. Now it’s our turn to carry her voice.’
What can we learn?
Nicole’s story is a powerful reminder to trust your instincts when it comes to your health. Persistent pain, unexplained lumps, or changes in your body should never be ignored—especially if initial treatments don’t work.
Salivary gland cancer is rare, but its symptoms can mimic far more common conditions, such as sinus infections or dental issues. These include:
- A painless lump in the jaw, cheek, mouth, or neck
- Numbness or drooping in part of the face
- Difficulty swallowing
While most people diagnosed with salivary gland cancer are in their 50s or 60s, Nicole’s case shows it can strike at any age. If you or someone you know is experiencing persistent, unexplained symptoms, don’t be afraid to seek a second opinion or push for further testing.
The power of resilience and community
Nicole’s journey also highlights the importance of support—both from loved ones and from the broader community. Her willingness to share her story helped others feel less alone, and her legacy continues to inspire.
What are your thoughts on the challenges presented by rare illnesses? How do you think healthcare systems can improve in supporting patients with uncommon conditions? Share your thoughts and stories in the comments below—your voice could make all the difference.
Also read: Leading cancer researcher shares heartbreaking health update
