At the age of 50, Angela Read faced a life-altering diagnosis of olfactory neuroblastoma, a rare cancer that affects the nasal cavity. Initially mistaking her symptoms for a sinus infection, Read’s journey underscores both the challenges of misdiagnosis and the resilience required to navigate a complex medical landscape.
A Journey from Confusion to Diagnosis
In early 2020, Read, a resident of Phoenix, Arizona, began to experience unusual congestion that she attributed to sinus infections she had dealt with throughout her life. As her condition persisted, she noted a troubling symptom: a loss of taste, which she initially dismissed as a common sign of COVID-19.
Encouraged by her mother to seek medical advice, she visited a local physician in Scottsdale, Arizona. During her appointment, the doctor performed a nasal examination and quickly identified an abnormal mass. “What’s that doing there?” he exclaimed, prompting an immediate biopsy. The results, which took longer than anticipated, were finally communicated to her just before New Year’s 2021. The news was devastating: she had a malignant tumor.
Understanding the Diagnosis and Treatment Options
Read learned that olfactory neuroblastoma accounts for only 3% of nasal cavity tumors, affecting approximately 1 in 2.5 million people annually, according to the National Cancer Institute. The diagnosis left her feeling panicked and uncertain about her next steps. “I had been otherwise healthy my entire life. You just don’t really ever expect that you are going to be the person that’s going to get that news,” she recalled.
Seeking multiple opinions, Read consulted various medical centers. One renowned institution had no availability for months, while another suggested a less invasive approach that did not align with her concerns. Ultimately, she turned to Johns Hopkins Medicine, where a team specializing in her cancer type was eager to begin treatment.
Her first surgery took place on February 1, 2021, followed by a second procedure just a week later. The surgeries lasted over 16 hours each, with pathologists performing regular biopsies to ensure complete removal of the cancerous tissue. “I’m incredibly grateful for the skill and expertise that the two surgeons have in that room for so many hours,” Read stated.
Following her surgeries, Read underwent five weeks of proton radiation therapy in Maryland. The experience was not only about physical recovery but also emotional resilience, as she had to adapt to a new normal that came with significant lifestyle changes.
Embracing a New Normal
Today, at 54, Read is cancer-free and continues to receive medical surveillance. She travels back to Johns Hopkins for regular check-ups and scans, choosing to maintain her care with the same team that saved her life. “It’s a bit of a homecoming every time we come back,” she remarked, expressing gratitude for the support she received.
Although she cannot smell or taste as she once did, Read has managed to find joy in her daily life. Her journey has taught her to appreciate the small moments, even as she adjusts to the physical changes brought on by her treatment. “Life isn’t what it used to be, but I’m OK with that,” she noted, reflecting on her experiences.
Read’s story serves as a powerful reminder of the importance of advocating for one’s health and the need for timely and accurate diagnoses. Her resilience and determination continue to inspire those around her, turning a challenging diagnosis into a narrative of hope and survival.
