During the COVID-19 pandemic in late 2020, Angie Read could not taste her mouthwash. Also experiencing one-sided congestion, she first assumed she had caught the virus. By the week between Christmas and New Year's Day, it became clear to Read that her symptoms had another cause.
When she saw a Scottsdale, Arizona, ENT specialist, Read recalls that he asked, "What's that doing there?" says Angie. "I remember thinking," she adds, "you never want to surprise your doctor."
Read was diagnosed with olfactory neuroblastoma, also known as esthesioneuroblastoma, a rare head and neck cancer found in the upper part of the nose where the olfactory epithelium - the specialized tissue in the nasal cavity responsible for the sense of smell - is located.
"The world was upside down already, and then I got a rare cancer diagnosis," says Read. "I asked my local doctor what we should do, and he didn't know. He gave me no names or next steps."
Olfactory neuroblastoma accounts for only 3%-6% of nasal cavity and paranasal sinus cancers, according to the National Cancer Institute. With such a rare diagnosis, Read struggled to find doctors with experience researching and treating this type of tumor.
"I'm my family's researcher - it's fortunate I'm wired that way," Read says. "So, I took it upon myself to look up options. I wanted to figure out who in the country knew enough about this type of tumor."
Read's list of institutions in the United States with experience in treating olfactory neuroblastoma was very short: three. At the top was the Johns Hopkins Medicine multidisciplinary team led by head and neck cancer surgeon Nyall London, M.D., Ph.D., and neurosurgeon Gary Gallia, M.D., Ph.D., whose labs have conducted research on olfactory neuroblastoma for many years.
"We are deeply committed to advancing the understanding and treatment of these complex malignances - including olfactory neuroblastoma - with the ultimate goal of improving outcomes and quality of life for our patients," says Gallia.
Thanks to the team's experience with her diagnosis and their efforts to make her visit as worthwhile as possible, Read gained the confidence needed to travel across the country to Johns Hopkins a week later for her MRI, CT and PET scans.
The stark contrast between Read's first diagnosis and her visit with experts in her type of cancer inspired critical trust in her care team.
"It was like catching lightning in a bottle," says Read. "As soon as I met this team, I knew they were the right ones for me."
The multidisciplinary team performed a minimally invasive endoscopic surgery to remove the tumor and affected olfactory epithelium nerves. After surgery, Read underwent five weeks of targeted proton therapy - a treatment designed to destroy a tumor while minimizing damage to surrounding healthy tissues.
While knowing her team had conducted research for years in her specific type of tumor was invaluable to her care journey, Read is concerned that disruptions in rare cancer research funding could lead to similar care journeys having different endings.
"When doctors have spent so much time looking at the tumor, understanding it, that gives the patient the confidence to move forward," says Read. "They delivered hope because they have spent so much time in the face of this tumor. Recognizing that these research opportunities may be taken away if funding is discontinued or researchers don't have the opportunities in the lab lessens hope."
"It's critical we continue performing research studies to better understand this rare tumor," says London.
Now four years post-treatment, Read is an advocate for early detection, awareness, rare cancer research and the importance of seeking specialized care.
"I approach the rest of my life with great optimism, and it is because of the gift this team has given me," says Read. "If you have unfortunate news about a diagnosis, choose a team you can put all your faith in. The mental peace that comes from confidence in your team is not insignificant."
