Angela Read, a 54-year-old resident of Phoenix, Arizona, has lived with a rare cancer diagnosis for the past five years. Initially mistaking her symptoms for a sinus infection, she faced the unexpected reality of olfactory neuroblastoma, a malignant tumor that typically develops in the nasal cavity.
In early 2020, Read began experiencing congestion on one side of her nose. Having dealt with sinus infections throughout her life, she initially believed she could manage the issue. “I knew how to self-treat,” she explained. As her symptoms persisted, she lost her sense of taste and began to feel alarmed, attributing her condition to COVID-19 at first. A suggestion from her mother about a possible nasal polyp led her to seek medical advice.
Upon visiting a local physician in Scottsdale, Arizona, Read underwent a nasal examination. “He looked at my nose with the scope immediately, and his first comment to me was, ‘What’s that doing there?’” she recalled. A CT scan revealed a mass, prompting an immediate biopsy. Read learned of her diagnosis just before New Year’s 2021, when she received the news that her tumor was malignant.
Faced with the life-altering diagnosis, Read experienced a mix of fear and confusion. “Well, now what?” she asked her doctor, who advised her to research and find a suitable medical center for treatment. Discovering that olfactory neuroblastoma accounts for only 3% of nasal cavity tumors, according to the National Cancer Institute, added to her distress. This rare cancer affects approximately 1 in 2.5 million people each year.
Read’s journey to find treatment involved multiple consultations. She sought opinions from various medical institutions, including one renowned for brain surgery, but faced long wait times. Eventually, she was referred to Johns Hopkins in Maryland, where she found a team dedicated to researching her specific type of tumor. “I knew the Hopkins team were my people,” Read said, recalling their eagerness to meet her shortly after the New Year.
Her treatment plan included surgery and radiation therapy. The first operation took place on February 1, 2021, followed by a second surgery to address the dura mater, the outermost layer surrounding the brain. The procedures were extensive, lasting up to 18 hours each, and pathologists conducted regular biopsies to ensure the cancer was completely removed.
Following her surgeries, Read and her husband relocated to Maryland for five weeks to undergo proton radiation therapy twice daily. “I’m incredibly grateful for the skill and expertise that the two surgeons had in that room for so many hours,” she expressed.
Now cancer-free, Read continues to undergo medical surveillance, returning to Johns Hopkins for regular check-ups and scans. Although she could have pursued treatment locally, she and her husband chose to maintain continuity with their original team. “It’s a bit of a homecoming every time we come back,” she said, acknowledging the emotional weight of returning to a place that had delivered both frightening news and life-saving care.
Despite the challenges she faces, including the loss of her sense of smell and necessary surgeries for her nose, Read embraces her “new normal.” She reflects on her journey with resilience, stating, “I don’t get myself stuck in the cycle of longing for what used to be.”
Angela Read’s story highlights the importance of early diagnosis and proactive medical care. Her experience serves as a reminder of the resilience of the human spirit in the face of adversity, as well as the critical role healthcare professionals play in navigating complex medical journeys.
