By Kate Harrold
THIS WOMAN’S toothache turned out to be CANCER which has left her TOOTHLESS and unable to open her mouth more than a centimetre.
Student Nicole Kowalski (28) from Los Angeles, California, USA, developed toothache in June of 2017 but after being told by her dentist that it was nothing to worry about, she soon dismissed her concern. However, the pain persisted for a further six months.
Fed up of being unable to sleep, Nicole sought medical advice and was treated for a sinus infection yet the pain still remained. During her next appointment with the dentist in January of 2018, an x-ray revealed that Nicole’s upper jaw was missing some bone.
The dentist transferred Nicole to an oral surgeon who removed a molar to perform a biopsy. The results revealed that Nicole had a rare yet benign tumour. A two-hour partial maxillectomy was performed to remove the harmless tumour and the six-months of pain appeared to be over.
Four of Nicole’s teeth were removed during the surgery and she was given an obturator – a type of prosthetic retainer – to seal the hole in her palate and replace the teeth allowing Nicole to eat, drink, and speak.
Just two weeks later, Nicole returned to the hospital for her follow-up appointment expecting to be given the all clear. Instead, test results revealed that Nicole had been misdiagnosed and she in fact had salivary gland cancer.
Cancer wasn’t new to Nicole’s family. Unfortunately, three of Nicole’s grandparents and two aunts had been diagnosed yet Nicole was still shocked and devastated to hear her diagnosis – particularly given her age. She spent the next 30 days undergoing radiation treatment.
Such treatments have a range of side effects and Nicole developed trismus which limits her ability to open her mouth. Nicole can only open her mouth to nine-millimetres and must exercise her jaw daily and attend speech therapy.
Despite the intensity of the treatment, Nicole’s pain persisted and doctors noticed a shift in the positioning of her teeth. In December 2019, a PET/CT scan revealed that the cancer had returned and Nicole’s jaw-bone was dying.
Surgery was required to remove her hard and soft palates as well as another seven teeth including Nicole’s front teeth. Additionally, Nicole underwent a further 30 days of radiation treatment to treat the cancer recurrence.
At the same time, Nicole’s personal life was in upheaval as her relationship of 10-years abruptly ended after her partner announced one day that he believed they’d grown apart.
Thankfully good news followed soon after. In August of 2020, Nicole was finally given the all clear and is now awaiting her new updated obturator, but she still experiences some pain in her jaw due to the limitations in movement.
However, Nicole is happy to have found love in her new partner, Eric, and has completed her bachelor’s degree and can now commit to studying for her masters. Nicole’s social life is back on track too and she’s recently taken up hiking in the Los Angeles area.
Dubbed ‘the lonely cancer,’ prosthetics like obturators for patients like Nicole are considered ‘unnecessary’ in the US healthcare system so people must pay out of their own pockets. However without this, Nicole wouldn’t be able to perform basic human functions like eating and talking.
Having had her life been so wholeheartedly affected by cancer, Nicole is determined to help others who feel alone and ignored showing them that they too deserve to be loved and supported – and that support is out there.
“Cancer runs in my family so you kind of realise that the chance you might get it is always there but I wasn’t prepared to hear those words,” Nicole said.
“I thought about my age and all the things I wanted to do. I felt an immense sense of loneliness.
“It started with a toothache. The dentist told me it was nothing to worry about but over the next six months, the pain increased and spread to my jaw and face.
“It was so intense that I couldn’t sleep. Eventually after a few trips to the doctors, an x-ray at the dentists revealed some bone loss.
“A biopsy revealed that I had a benign tumour. This was in my upper right jaw and I underwent surgery to remove it.
“The doctor removed four teeth and a portion of my soft palate and I was given my obturator to fill in the defect and replace the teeth.
“It wasn’t until I went back for my follow up appointment that I found out I was misdiagnosed and had salivary gland cancer.
“I spent a month attending radiation treatment yet I still experienced intense pain. A year after my first round, my teeth started to shift which wasn’t normal and doctors thought my bone might be dying – a possible side effect of the treatment.
“I went back in for surgery and had the rest of my soft palate along with the majority of my hard palate removed and seven more teeth. This was followed by further radiation treatment.
“As of right now, my scans are clear and the pain is much duller and no longer so intense. I should get my new obturator this month.”
The radiation treatment caused Nicole to develop trismus.
“Trismus is a condition that affects someone’s ability to open their mouth,” Nicole said.
“I can only open my mouth nine-millimetres wide. It makes eating and speaking difficult and I have to stretch my jaw every day.
“I use tongue depressors to leverage my jaw open four or five times a day. I attend speech therapy twice a week too and have an entire kit to keep my mouth clean and tidy.
“In addition to my health, my personal life was hit too as I went through a divorce last year. We’d been together for ten years so it came as a shock to me.
“It was hard to think of being an independent person without that relationship but we divorced amicably and I’m very lucky to have had him as a friend.
“I met Eric last year and falling in love with him has been magical. I feel like the luckiest person in the world to have him as my partner.
“We hadn’t even known each other a year but during my second surgery, Eric spent every single day with me at the hospital making sure I was getting everything I needed.
“It was and is still so clear how much he loves and supports me.”
With her life back on track, Nicole is determined to help others.
“It’s okay to feel what you’re feeling. If you need to grieve or cry or scream, do it,” Nicole said.
“People will try to tell you what to do, how to fix things, how to feel, and when to go back to work but listen to you and stay positive.
“The disease changed everything about my life and the way I look at the world. I had no idea this cancer existed.
“Head and neck cancer is often dubbed ‘the lonely cancer’ as cancer awareness stops at a certain point. We do not often receive the support or understanding we need to navigate our illness.
“It is common in the United States for us to pay out of pocket for our prosthetics as insurance companies view them as unnecessary even though this kind of cancer affects the way we do everything – including talk, breathe, drink, and eat.
“We deserve to be seen, heard, supported and loved. Most of all, we deserve to be understood.
“This disease may have taken away chunks of my mouth and plenty of teeth, but it didn’t take away my voice.”