This woman’s piercing toothache was misdiagnosed by doctors and turned out to be cancer

This article is part of Cheers series, Misdiagnosed, featuring stories of real women who had their medical symptoms ignored or misdiagnosed.

It all started in June 2017. I was a 27-year-old competitive aerialist who lived in Los Angeles and worked for a technology company. My ultimate goal was to open my own dance studio. But, out of nowhere, I started to have a toothache on the right side of the mouth, near the back. I thought it was just one of those things that happen to your body, so I tried to wait. When it didn’t pass, I went to the dentist. She took X-rays and told me not to worry about it.

Over six months, this toothache gradually grew to debilitating jaw and facial pain. I started to have less energy and to ask for leave of work. When I came back to the dentist in January, she thought I had temporomandibular joint (TMJ) dysfunction due to the tightening of my jaw at night and recommended a night watchman.

During the consultation to get the impression of the night guard, she took another x-ray and realized that a lot of bone was missing. She referred me to a periodontist, and he had no idea what it was. So he sent me to an oral surgeon. The oral surgeon decided to extract that back tooth from where the toothache started. At that point, that back tooth had come loose and I could barely chew that side. It was very painful.

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Doctors blame a benign tumor

In January 2017, the oral surgeon sent a biopsy of my tooth extraction to another hospital. I waited two weeks, and the biopsy showed that I had desmoplastic fibroma, a very rare but benign bone tumor. I had to look for an oral surgeon who could actually do the surgery to remove it. The oral surgeon I met had no idea what that surgery would involve because it was so rare. Then he referred me to a clinic, and all the doctors I met offered no relief from this unbearable pain.

Fortunately, my mother worked for a doctor whose brother was an ear, nose and throat specialist at a large hospital, who connected me to a head and neck surgeon there. This specialist was the first doctor to actually sit down and tell me exactly what was going on. He informed me that to remove the tumor I would have to pull out four teeth and part of my soft palate. I would also have to wear a prosthetic dentition called a obturator, which had a wire in the front, for the rest of my life.

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A surprising and scary diagnosis

I had the surgery in March 2018, and after five days in the hospital, they sent me home. Two weeks later, the head and neck doctor said there was a “discrepancy” in my biopsy and I actually had low-grade salivary gland cancer, not a benign tumor. It is very rare, and I had no idea that this type of cancer existed before I had it. Apparently, my doctor did not dissect enough tissue on my original biopsy to make a proper diagnosis earlier.

I was livid. I have a family history of cancer, so I always knew there was a high likelihood of getting it – but I didn’t expect it at age 27. I was afraid, but I was ready to fight.

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In May, I completed 30 days of radiation. However, the symptoms and pain I felt were never gone. It just stayed on my chin, and no one could find out what it was. On the 1 to 10 pain scale, it was probably 8 or 9 consistently. At that point, I had all my front teeth and still managed to smile; I had only 4 teeth removed on the right side.

More pain, more questions

That summer, I was still in pain. I asked to get a new shutter without the front wire, because I didn’t worry about it too much. Unfortunately, with the new obturator, my teeth started to change significantly; they started to separate and tuck in my gums. The doctors expected a change because they removed the bone there, but not to this degree. So, I went to my oncologist, who said that I may have necrosis – which means that the bone in my mouth is dying from radiation and I would have to have the surgery again. This time, they would have to pull out all my front teeth and any tissue that was dying around them.

In the midst of it all, my husband and I made the friendly decision to split up. We were high school sweethearts that we married young and, in the end, we were moving in different directions. I appreciate your support and my illness was not a factor in our separation, but we had to do what was best for both of us.

In December, I had my second surgery. This time, they removed the front teeth, the rest of my soft palate and about three-quarters of my hard palate – so I have a huge space in my mouth. But I thought I had good news: after the surgery, when I was back in my hospital room, one of the attending doctors came and said that my biopsy was negative and I don’t have cancer. Unfortunately, when I returned for follow-up after surgery, my biopsy showed recurrence of salivary gland cancer. I had to do another round of radiation; chemotherapy was not an option with this type of cancer.

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There is no other way to say it except that the situation was terrible. But having cancer changed my life in many ways. I went back to school and finished my bachelor’s degree, which I probably wouldn’t have done if it hadn’t happened. I am now in a master’s program and about to become a forensic psychologist. I have a wonderful boyfriend who is incredibly supportive and stayed in the hospital with me every day, never leaving my side. This cancer helped to take my life where it is now.

Life after cancer

According to my most recent exams in November, I’m finally cancer free. I was happy to receive good news. However, the side effects I’m experiencing are serious: I have to use this shutter in my mouth for the rest of my life, I don’t have a hard or soft palate, which makes it difficult to speak, hear and swallow. I also developed severe trismus (locking) because of the radiation, which prevents me from opening my jaw to eat or speak. I can only open my mouth about a third of an inch.

I go to speech therapy and have to exercise daily to stretch my jaw. I have permanent numbness in my face and a deviated septum that distorts my nasal passages, making breathing a little harder. I still feel a little bit of pain, but it’s nowhere near where it was. At the moment, I have not been able to return to work because I feel intense tiredness and it is difficult to stay awake during the day.

If the first extraction biopsy was done differently, much of my trauma could have been avoided. I ended up seeing 15 doctors in general during my symptoms and cancer. I was treated for sinus infection, TMJ and allergies – but it had nothing to do with what was really going on. Some of these doctors are currently working with me on rehabilitation and possible reconstructive surgery, while others are helping me control my pain and keep an eye on the surgery site.

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I learned a lot from that experience. I had to change my diet, because there are some foods that I can’t eat (popcorn, for example) because of my trismus. When I look at my old photos and look at my face now, I notice that the right side has dropped slightly, my upper lip is not the same and my nose has kind of sunk into the right side of my face. it is not extreme, but it is different and it definitely affected my self-confidence. I still struggle and it is a very difficult element to accept. Sometimes there is nothing you can say to yourself on difficult days, but I am trying to remember that I am here – I am alive, I am a survivor and I have survived cancer twice. I am a big believer in self-affirmations and I repeat mantras and try to sit with myself and be aware. This is the best way to get back to reality.

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For those who worry about being misdiagnosed, never give up on finding out what’s wrong with you. I went to several doctors over the months. I just continued to struggle to find out what was going on with my body. If a doctor does not agree with you or you feel that he is not giving you direct answers, find someone else. There are always other doctors, there are always other resources. Ask questions and be curious.

If you have a story to share about being misdiagnosed, send an email to [email protected] and join our incorrectly diagnosed Facebook community to chat with women who share the same struggle.