Nicole, 28, from California, found her toothache was actually a tumor. Please read her story
Woman is left partially toothless at 28 and with permanent lockjaw after the toothache that her dentist dismissed turned out to be cancer
- Nicole Kowalski, 28, from California, found her toothache was actually a tumor
- Her fears were dismissed by dentists after she complained of a longlasting pain
- Found in 2018 that had a rare benign tumor in her upper jaw which was treated
- Found later that tumor was actually cancer and left toothless from treatment
A woman has been left toothless and unable to open her mouth more than a centimeter, after a toothache that was dismissed by dentists turned out to be cancer.
Student Nicole Kowalski, 28, from Los Angeles, was left with life-changing alterations to her face after she was diagnosed with salivary gland cancer in 2018.
She had been complaining of a pain in her jaw for months, which her dentist had dismissed as nothing to worry about.
An X-ray concluded a benign tumor was lodged on the student’s upper jaw. However, after initial treatment, it was revealed the tumor was cancerous and needed to be treated immediately.
Nicole was left with trismus – more commonly known as lockjaw – after her treatment, and can now only open her mouth a few millimeters.
After years of distress, she was finally given the all clear to receive a new obtruator – a type of prosthetic retainer – to replace the teeth she’s missed.
The Californian student 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.
‘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.’
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.
‘A biopsy revealed that I had a benign tumor. This was in my upper right jaw and I underwent surgery to remove it.
A two-hour partial maxillectomy was performed to remove the harmless tumor 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 to seal the hole in her palate and replace the teeth allowing Nicole to eat, drink, and speak.
‘It wasn’t until I went back for my follow up appointment that I found out I was misdiagnosed and had salivary gland cancer.
‘Cancer runs in my family so you kind of realize 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.
What are salivary gland tumors?
There are several types of salivary glands in and around the human mouth, and all can fall victim to benign or cancerous tumors.
The glands are where saliva is produced to lubricate the mouth and throat and to digest food.
The three types of salivary gland are the parotid glands, the submandibular glands, and the sublingual glands.
Tumors in the parotid glands – which are just in front of the ears – are the most common, making up about 70 per cent of salivary gland tumors.
Submandibular tumors are the second most common, accounting for 10 to 20 per cent of tumors – the glands are just below the jaw.
The sublingual glands are the smallest and are in the bottom of the mouth under the tongue – tumors starting in these are rare.
Source: American Cancer Society
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-millimeters 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.
‘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.
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 ten-years abruptly ended after her partner announced one day that he believed they’d grown apart.
‘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.
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.
‘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, and she still experiences some pain in her jaw due to the limitations in movement.
‘Trismus is a condition that affects someone’s ability to open their mouth,” Nicole said.
‘I can only open my mouth nine-millimeters 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.
Nicole explained that head and neck cancers are often dubbed ‘the lonely cancers’, because of the lack of awareness about them – and the struggle that many survivors face to get help after their diagnosis and recovery.
Prosthetics, like the obturator Nicole needs, 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.
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.
‘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,’ she said.
‘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.’
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.
‘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.’
This article’s original source is: Daily Mail UK