A 28-year-old California woman described the shock of being diagnosed with a deadly breast cancer that affects fewer than one in a million people and led to the removal of her right eye.
The woman’s doctors first mistook the “golf ball-sized tumor,” which had spread throughout her face, for a sinus infection.
Annika, who posts about her condition on TikTok, woke up one morning in 2023 and noticed that the inner corner of her right eye hurt.
While he didn’t think anything of it at first, as night came, “my face started hurting really, really bad on the right side,” he said in a video.
The next day, her face swelled around her right eye, prompting her to seek medical attention.
Annika, 28, was diagnosed with a rare nasal cancer after doctors mistook it for a sinus infection. She initially went to the hospital with swelling around her eye.
Annika was diagnosed with stage four SMARCB1 (INI deficiency) sinonasal carcinoma, which had spread to her face, lungs and lymph nodes.
A CT scan in the emergency room showed inflammation around Annika’s eye, leading doctors to suspect she had a sinus infection. The swelling went down within a few days and returned about a week later.
During Annika’s second visit to the emergency room, “the doctor felt my eye and said, ‘This doesn’t look like a sinus infection.’
This time, a CT scan revealed a mass “about the size of a golf ball,” which “wasn’t there three weeks ago.”
At just 27 years old, Annika was diagnosed with stage four SMARCB1 sinonasal carcinoma, which had spread to her face, lungs and lymph nodes.
Sinonasal cancers begin in the nasal cavity, which is located just behind and around the sides of the nose. Various forms of cancer can grow there, but SMARCB1 is considered extremely rare.
According NIH research, fewer than 200 cases have been reported in the medical literature. The study also noted that it accounts for only one percent of all head and neck cancers.
Much is still unknown about the prognosis, but the NIH states that most patients survive only two to four years after diagnosis, and “more advanced-stage tumors are associated with a worse prognosis.”
Symptoms include nasal blockages, headaches, protrusion of the eyeball, and nosebleeds.
Annika said she started chemotherapy “almost immediately,” which lasted nine weeks.
However, she saw little improvement and underwent surgery in December 2023.
“They also had to take surrounding tissue, which included my right eye,” he said in another TikTok video.
“So what you see now is essentially a piece of my thigh filling that void.”
“I’m told it will go down a little bit, but it’s also a different color because my thigh was much tanner.”
Annika is currently on an experimental treatment plan that includes chemotherapy and immunotherapy to slow the spread of her disease.
Although the statistics are discouraging, Annika has admitted that she does not know what her prognosis is.
“I know it’s not cool,” he said.
“I know when you read about my cancer it’s ‘rare, aggressive and has a poor prognosis,’ but no doctor has ever sat me down and said, ‘This is how much time you have left to live.'”