This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
Everything started in June 2017. I was a 27-year-old competitive aerialist living in Los Angeles and working at a tech company. My ultimate goal was to start my own dance studio. But out of the blue, I started having a toothache on the right side of my mouth, close to the back. I thought it was just one of those things that happen to your body, so I tried to wait it out. When it didn't go away, I went to my dentist. She took X-rays and told me not to worry about it.
For six months, that toothache gradually grew into debilitating jaw and facial pain. I started having less energy and calling out of work. When I went back to the dentist in January, she thought I had temporomandibular joint dysfunction (TMJ) from clenching my jaw at night and recommended a night guard.
During the appointment to get the night guard impression, she took another X-ray and noticed a lot of bone 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 where the toothache started. At this point that back tooth had loosened up and I could barely chew on that side. It was just too painful.
Doctors blame a benign tumor
In January of 2017, the oral surgeon sent a biopsy of my tooth extraction off 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 perform the surgery to remove it. The oral surgeon I found had no clue what that surgery would entail because it was so rare. So he referred me to a clinic, and every doctor I encountered offered no relief for this excruciating pain.
Luckily my mom worked for a doctor whose brother was an ear, nose, and throat specialist at a major hospital, who connected me to a head and neck surgeon there. This specialist was the first doctor to actually sit me down and tell me exactly what was going on. He informed me that in order to remove the tumor, he would have to take out four teeth and part of my soft palate. I'd also have to wear a set of prosthetic teeth called an obturator, which had a wire in front, for the rest of my life.
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A surprise, 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's very rare, and I had no idea this kind of cancer even existed before I had it. Apparently my doctor didn't dissect enough tissue in my original biopsy to make a proper diagnosis sooner.
I was livid. I have a family history of cancer, so I always knew there was a high likelihood that I would get it—but I didn't expect it at age 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 was experiencing never went away. It just stayed in my jaw, and no one could quite figure out what it was. On the 1 to 10 pain scale, I was probably at an 8 or 9 consistently. At this point I had all of 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-conscious about that. Unfortunately with the new obturator, my teeth started to shift significantly; they began to separate and bend into my gums. Doctors expected a shift because they removed the bone there, but not to this degree. So I went to my oncologist who said I may have necrosis—meaning that the bone in my mouth is dying because of the radiation and I would have to get surgery again. This time, they would have to take out all of my front teeth and whatever tissue was dying around them.
In the middle of all this, my husband and I made an amicable decision to separate. We were high school sweethearts who married young, and ultimately we were moving in different directions. I'm thankful for his support and my illness was not a factor in our separation, but we had to do what was best for both us.
In December, I had 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 gigantic space in my mouth. I thought I had some good news, though: After surgery, when I was back in my hospital room, one of the attending doctors came in and said my biopsy came back negative and I don't have cancer. Unfortunately, when I went back again for a follow-up after the surgery, my biopsy showed recurrence of salivary gland cancer. I had to do another round of radiation; chemotherapy wasn't an option with this type of cancer.
There's no other way to put it than to say the situation sucked. 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 had this not happened. I'm now in a master's degree program and on the road to becoming a forensic psychologist. I have a wonderful boyfriend who's incredibly supportive and was in the hospital with me every single day, never leaving my side. This cancer helped get my life to where it is now.
Life after cancer
According to my most recent scans in November, I'm finally cancer-free. I was glad to get some good news. However, the side effects I'm living with are rough: I have to wear this obturator in my mouth for the rest of my life, I have no hard or soft palate, making it difficult speak, hear, and swallow. I also developed severe trismus (lockjaw) from the radiation, which prevents me from opening my jaw to eat or talk. I can only open my mouth about one-third of an inch.
I go to speech therapy and have to do exercises daily to stretch my jaw. I have permanent numbness in my face and a deviated septum that distorts my nasal passages, making it a little harder to breathe. I still have some pain, but it's not anywhere near where it once was. Right now I haven't been able to go back to work because I feel intense fatigue, and I have a hard time staying awake during the day.
If the first extraction biopsy was done differently, a lot of my trauma could have been avoided. I ended up seeing 15 doctors overall throughout 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 manage my pain and keeping an eye on the surgical site.
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I've learned a lot from this experience. I've had to alter my diet, since there are some foods I can't eat (popcorn, for example) because of my trismus. When I look at my old pictures and look at my face now, I notice the right side has drooped a little bit, my top lip is not the same, and my nose has kind of caved into the right side of my face. it's not extreme but it's different, and it's definitely affected my self-confidence. I still struggle and it's a really hard element to accept. Sometimes there's nothing you can tell yourself on the rough days, but I'm trying to remember that I am here—I'm alive, I'm a survivor, and I've made it through cancer twice now. I'm a big believer in self-affirmations, and I repeat mantras and try to sit with myself and be mindful. That's kind of the best way to come back to reality.
For those who worry about being misdiagnosed, never give up on finding what's wrong with you. I went to multiple doctors over the span months. I just continued to fight to figure out what was happening to my body. If one doctor doesn't sit right with you or you feel like they're not giving you straight answers, find someone else. There are always other doctors, there are always other resources. Ask questions and stay curious.
If you have a story to share about being misdiagnosed, email us at [email protected] and join our Misdiagnosed Facebook community to talk to women who share the same struggle.