Angela Read, a resident of Phoenix, Arizona, received a diagnosis of olfactory neuroblastoma, a rare form of cancer, at the age of 50. Initially mistaking her symptoms for a sinus infection, Read’s health journey took a dire turn that would change her life forever. This diagnosis came after a challenging series of events that began in 2020 when she experienced congestion on one side of her nose.
At first, Read believed she could manage her symptoms herself. “I had dealt with sinus infections here and there, and I knew how to self-treat,” she recalled. Despite her attempts with various rinses and home remedies, her condition worsened. Alarmingly, she lost her sense of taste, which she attributed to common COVID-19 symptoms at the time. It was only after her mother suggested a possible nasal polyp that she sought medical attention.
During a visit to a local physician in Scottsdale, the doctor performed a quick examination. “He looked at my nose with the scope immediately, and his first comment to me was, ‘What’s that doing there?’” she said. A CT scan revealed a mass, prompting an immediate biopsy that would ultimately lead to her shocking diagnosis.
Facing the Diagnosis
Receiving the news that her tumor was malignant was a turning point for Read. “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 shared. The doctor informed her that she had olfactory neuroblastoma, a condition that affects only about 3% of nasal cavity tumor cases, according to the National Cancer Institute.
Read felt a surge of panic as she grappled with her diagnosis. “I don’t know. I’m not your guy,” her doctor told her, suggesting she research treatment options at specialized medical centers. This was a new experience for Read, who had always been the informed one in her family.
She learned that the cancer affects about 1 in 2.5 million people each year and can impact the sense of smell while potentially spreading to other areas. Fortunately, her cancer had not metastasized beyond the primary tumor, a fact she considered fortunate given the complexity of her diagnosis.
Seeking Treatment
Determined to explore her options, Read sought opinions from multiple medical institutions. One reputable brain cancer center could not accommodate her for months, while another suggested a less invasive procedure that did not feel right to her. Ultimately, she turned to Johns Hopkins Medicine in Maryland, where she felt a strong connection with the medical team. “I knew the Hopkins team were my people,” she said, recalling their extensive research on her condition.
Her treatment began with surgery scheduled for February 1, 2021. The first operation lasted approximately 16 hours, focusing on removing the tumor. A second surgery followed shortly, addressing the dura mater, a critical protective layer of the brain. Throughout her treatment, pathologists conducted regular biopsies to ensure complete cancer removal.
Post-surgery, Read underwent a rigorous regimen of proton radiation therapy for five weeks, requiring her and her husband to relocate temporarily to Maryland. “I’m incredibly grateful for the skill and expertise,” she stated, reflecting on the dedication of her surgical team.
Today, Read is cancer-free and continues to receive medical surveillance at Johns Hopkins. Although she could have sought care locally, she preferred to maintain continuity with the same medical team that saved her life. “It’s a bit of a homecoming every time we come back,” she noted, expressing gratitude for the care she received.
However, the journey has altered her life significantly. Radiation treatment closed her tear ducts and caused her septum to collapse, necessitating further surgery. She has also had to adjust to living without her sense of smell, which has impacted everyday tasks, such as cooking.
Reflecting on her experience, Read cherishes moments that connect her to her past. During her initial radiation treatments, she visited the cherry blossoms in Maryland, recalling fond memories of her father, who served in the military. “It felt like a bit of a wink that he was right there with me,” she shared, emphasizing the significance of these memories during her treatment journey.
As she continues her life post-treatment, Read embraces a new normal. Although she mourns the loss of simple pleasures like smelling freshly cut grass, she remains resilient. “This is just what normal is to me, and so it doesn’t really get me down,” she concluded, demonstrating her strength and determination in the face of adversity.
