This woman’s contagious toothache has been misdiagnosed by doctors, and it turns out to be cancer

This article is part of Health’s series, misdiagnosed, with stories of real women who had their medical symptoms dismissed or misdiagnosed.

It all started in June 2017. I was a 27-year-old competitive aeronautical scientist living in Los Angeles and working at a technology company. My ultimate goal was to start my own dance studio. But out of the blue, I started getting toothache on the right side of my mouth, close to the back. I thought it was just one of those things that happens to your body, and I tried to wait it out. When it did not go away, I went to my dentist. She took X-rays and said I did not have to worry about it.

For six months, that toothache gradually grew into debilitating jaw and facial pain. I had less energy and called without work. When I went back to the dentist in January, she thought I had temporomandibular joint function (TMJ) because I was pinching my jaw at night and recommended a night watch.

During the appointment to get the night watch impression, she took another x-ray and noticed that a lot of bone was missing. She referred me to a periodontist, and he had no idea what it was. So he sends me to an oral surgeon. The oral surgeon decided to extract the back tooth where the toothache started. At this point the hind tooth loosened and I could barely chew to the side. It was just too 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 perform the surgery to remove it. The oral surgeon I found had no idea what the surgery would involve because it was so rare. Therefore, he referred me to a clinic, and every doctor I came across offered no relief for this excruciating pain.

Luckily, my mother worked for a doctor whose brother was a specialist in ear, nose and throat in a large hospital, who connected me with a head and neck surgeon there. This specialist was the first doctor who really sat me down and told me exactly what was going on. He told me he had to remove four teeth and part of my soft palate to remove the tumor. I will also have to wear a set of prosthetic teeth for the rest of my life, an obturator, with a wire in front.

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A surprise, a scary diagnosis

I had 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 a low-grade salivary gland cancer, not a benign tumor. It’s very rare, and I had no idea this type of cancer even existed before I had it. My doctor apparently did not analyze enough tissue in my original biopsy to make a good diagnosis earlier.

I was alive. I have a family history of cancer, which is why I always knew I would probably get it – but I did not expect it at 27. I felt fear, but I was ready to fight.

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In May, I completed 30 days of radiation. Yet the symptoms and pain I experienced never disappeared. It just stayed in my jaw, and no one could quite figure out what it was. On a scale of 1 to 10, I was probably consistent on an 8 or 9. At this point, I had all my front teeth and I could still smile; I only had 4 teeth removed from the right side.

More pain, more questions

That summer I was still in pain. I asked to get a new obturator without the wire in front as I was little self aware about it. Unfortunately, my teeth started to move significantly with the new obturator; they began to separate and bent into my gums. Doctors expected a move because they removed the bone there, but not to this extent. So I went to my oncologist who said that I could have necrosis, which means that the bone in my mouth is dying due to the radiation and that I need to have another operation. This time they’ll have to remove all my front teeth and all the tissues that die from it.

In the midst of all this, my husband and I made a kind decision to divorce. We were high school sweethearts who got married young, and eventually we moved in different directions. I am grateful for his 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 underwent my second surgery. This time they removed those front teeth, the rest of my soft palate and about three-quarters of my hard palate – so I have this huge space in my mouth. However, I thought I had good news: after the surgery, when I was back in my hospital room, one of the treating doctors came in and said that my biopsy was negative and that I did not have cancer. Unfortunately, when I went back for a follow-up after the surgery, my biopsy showed a recurrence of salivary gland cancer. I had to do another round of radiation; chemotherapy was not an option for this type of cancer.

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There is no other way to put it than to say that the situation is struggling. But cancer has changed my life in many ways. I went back to school and completed my bachelor’s degree, which I probably would not have done if it had not happened. I am now in a master’s degree program and on my way to becoming a forensic psychologist. I have a wonderful boyfriend who is incredibly supportive and was with me in the hospital every day and never left my side. This cancer has helped bring my life to where it is now.

Life after cancer

According to my recent scans in November, I am finally cancer free. I was glad to get good news. However, the side effects I live with are rough: I have to carry this obturator in my mouth for the rest of my life, I have no hard or soft palate, which makes it difficult to speak, hear and swallow. I also developed severe trism (lockjaw) from the radiation, which prevented me from opening my jaw to eat or talk. I can only open my mouth about a third of an inch.

I go to speech therapy and have to do exercises daily to stretch my jaw. I have a permanent numbness in my face and a deviant septum that twists my nasal passages, making it harder to breathe. I’m still in pain, but it’s not close to where it used to be. At the moment I could not go back to work because I feel intense fatigue and it is difficult to stay awake during the day.

If the first extraction biopsy had been done differently, much of my trauma could have been avoided. Eventually I see 15 doctors in my symptoms and cancer. I was treated for a sinus infection, TMJ and allergies – but all had nothing to do with what was actually going on. Some of these doctors are currently working with me on rehabilitation and possible reconstruction surgery, while others are helping me deal with my pain and keep an eye on the surgical site.

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I learned a lot from this experience. I had to change my diet because there are foods I can not eat (for example popcorn) due to my trismus. When I look at my old photos and now look at my face, I see that the right side has dropped slightly, my upper lip is not the same and my nose is pressed into the right side of my face. it’s not extreme, but it’s different, and it definitely affected my confidence. I’m still struggling and this is a very difficult element to accept. Sometimes there’s nothing you can tell yourself on the hard days, but I try to remember that I’m here – I’m alive, I’m a survivor and have done it twice by cancer. I believe very strongly in self-affirmations, and I repeat mantras and try to sit by myself and be mindful. This is the best way to get back to reality.

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For those who are worried about being misdiagnosed, never stop finding what is wrong with you. I have been going to several doctors in recent months. I just kept fighting to find out what was happening to my body. If one doctor is not sitting right next to you, or you feel he is not giving you straight answers, you need to find someone else. There are always other doctors, there are always other resources. Ask questions and stay curious.

If you have a story to tell that you were misdiagnosed, send an email to [email protected] and join our misdiagnosed Facebook community to talk to women who are fighting the same battle.