Angela Read, a 54-year-old resident of Phoenix, Arizona, has faced significant changes in her life after being diagnosed with olfactory neuroblastoma in 2020. This rare form of cancer, which arises from the olfactory nerve cells in the nasal cavity, altered her relationship with some of life’s simple pleasures, including the ability to smell.
Initially, Read believed her symptoms were a result of a common sinus infection. When congestion developed on one side of her nose, she attempted various self-treatment methods. “I had dealt with sinus infections here and there, and I knew how to self-treat,” she explained. However, her condition worsened, and she lost her sense of taste, which she initially attributed to COVID-19.
Confused by her symptoms, Read sought medical advice after her mother suggested a possible nasal polyp. A local physician in Scottsdale, Arizona, examined her and promptly performed a biopsy. The results revealed that she had a malignant tumor at the age of 50. “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.
Finding the Right Treatment
Following her diagnosis, Read felt overwhelmed and anxious about the path ahead. She learned that olfactory neuroblastoma accounts for only 3% of nasal cavity tumor cases, impacting approximately 1 in 2.5 million people annually, according to the National Cancer Institute. Understanding the rarity of her condition only added to her concern.
Determined to find the best care, Read sought multiple medical opinions. One renowned institution could not provide an appointment for months, while another suggested a minimally invasive approach that did not satisfy her concerns. Ultimately, she chose to consult with the team at Johns Hopkins Medicine in Maryland, who had been actively researching this type of tumor.
“They wanted to see her in person the following week,” Read said. This meeting marked the beginning of her extensive treatment journey, which included two significant surgeries on February 1, 2021, and the subsequent week. These surgeries aimed to remove the tumor and assess its impact on surrounding tissues.
During her time at Johns Hopkins, Read underwent 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 of the surgeons,” Read remarked about the long hours spent in the operating room.
A New Normal
Today, Read is cancer-free and continues to undergo routine checkups at Johns Hopkins, returning for scans and evaluations as needed. Although she could have opted for care closer to home, she and her husband decided to maintain continuity with the team that saved her life. “It’s a bit of a homecoming every time we come back,” she said, expressing her gratitude for the medical professionals involved in her treatment.
The impact of her illness has led to lasting changes. Radiation treatment affected her tear ducts and altered her sense of smell permanently. “I’ve accepted that I can’t smell my perfume,” Read stated, acknowledging the lifestyle adjustments she has had to make. She no longer relies on her nose for detecting smoke or burnt food, which requires vigilance in her daily life.
Reflecting on her journey, Read shared a poignant memory from the early days of her treatment. During her first two weeks of radiation, she visited Maryland with her daughter. They admired the cherry blossoms, which held personal significance for Read, reminding her of her childhood spent in Washington, D.C. “It felt like a bit of a wink that [my father] was right there with me,” she recalled, highlighting the emotional support she found even amid her struggles.
Read’s story serves as a powerful reminder of the importance of seeking medical attention when symptoms arise and the resilience required to face unexpected health challenges. Her journey continues, but she remains hopeful and focused on cherishing the moments that matter.
