Teenager shares being diagnosed with rare form of bone cancer two days after birthday

Olivia DeJong, a Psychology student has shared her experience with a rare type of bone cancer. Olivia has shared her symptoms and how she mistook it for something less severe initially.

Her post on Quora has been upvoted 39, 011 times and has received 2.1 million views so far.

"A few weeks before my nineteenth birthday, I was sitting to the right of my mom. When I went to look at her, she pointed out that my left eye did not track with my right eye, which made it look like I had a lazy eye," she writes.

"The next day, after we had all laughed it off (because it did look quite goofy), my mom made an appointment with a neuro-opthalmologist. We went in on a busy Saturday and after he examined my eye, he requested that we make another appointment on a day when he would have more time to dedicate to me and the testing that would have to be done," she adds.

Olivia says she had also experienced double visions earlier. Her doctor explained that her eye condition may be due to sixth cranial nerve palsy, or an infection, or, in very rare cases, a brain tumor.

"He ordered a chest x-ray, blood work, and a head MRI," she writes.

It was during 2020 when she was having her online classes, her mother ran to her and asked her to talk to her doctor who was on the phone.

"My doctor was on the other end. He told me that I had a mass in my brain that was pressing against my sixth cranial nerve. He suggested that it was a very rare form of bone cancer in my brain called chordoma that had grown on my skull base, in the middle of my head. I was diagnosed two days after my nineteenth birthday," writes Olivia.

"Since then, my diagnosis was confirmed and I had surgery to remove the tumor. I had many complications, like infections and brain fluid leaks, but I made it out. There was about 5–10% of the tumor left, so I underwent proton radiation therapy to kill the rest of the cancer. In a few weeks, I will have been in partial remission for a year :) I also had eye surgery about ten months ago to correct my eye, which was stuck looking inward since my first surgery. Since then, I’ve been dealing with a lot of other issues because of my tumor and treatment, like chronic nerve damage/pain, Hashimoto’s disease and hypothyroidism, but I have a wonderful team of doctors who have provided me with great treatments," Olivia describes her surgery.

A Quora user has shared his experience of dealing with Chordoma. Appreciating Olivia and wishing her good luck, he has shared how he did not realise this cancer in his wife until one day she passed out.

He writes: Then a major nasal operation took place to remove the tumor. It was a long and painful process for her and as well as my little kids at the time. You’re the first person that I’ve read or heard who went through the same things that my wife did. So I can easily say this, you are a very very strong and brave girl. I said this too many times, I could have never survived if I were my wife. Seeing her clinging to life bravely, with the motivation to see our kids grow and prosper, made me fall in love with her again. It took two years for her to recover completely after radiation therapies, two eye surgeries and months of physical therapy (she also had a seizure on the left side of her body).

Chordoma is a form of cancer that grows inside the spine and anywhere along the spine.

This slow growing cancer is found near the tailbone mostly.

"These tumors are considered malignant and may metastasize, though they typically grow slowly. Even slow-growing chordomas can become aggressive and grow quite large locally, putting pressure on or invading into critical parts of the brain or spine, which may cause pain and nerve problems or even be life threatening," say experts at John Hopkins.

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The common symptoms associated with chordoma are tingling, numbness, vision problem, swallowing difficulty, sexual dysfunction and lack of bowel control mostly.

The symptoms mostly depend on the specific part of the spinal cord they grow.