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Rarest Cancer Diagnosis After Years of Mystery Pain
22 Mar
Summary
- Mum endured six years of unexplained symptoms before diagnosis.
- Bilateral carotid body tumours, a rare cancer, had grown for decades.
- Cancer spread, impacting her lymph nodes, spine, and vagus nerve.
Ashleigh Smith, a 36-year-old Brisbane mother, faced over six years of persistent, unexplained pain and exhaustion before a July 2025 scan revealed a devastating diagnosis: bilateral carotid body tumours. This extremely rare cancer, with fewer than 40 documented cases like hers, had been growing undetected for decades.
Initially presenting as vague symptoms like fatigue and a "bread pain" sensation in her throat, Ashleigh consulted numerous specialists without finding answers. By the time the tumours were identified, the cancer had metastasised to her lymph nodes, spine, and vagus nerve.
Her treatment began in November 2025 with surgery to remove one tumour, followed by radiation therapy over Christmas and New Year. A second surgery in January 2026 was complicated when doctors discovered an inoperable tumour entangled with facial nerves, leaving her with a persistent throbbing pain on the left side of her face.
Smith has since experienced severe migraines, vomiting, and fainting spells due to pain and a reaction to opioid medication. She now lives with significant independence loss, unable to walk more than 100 metres, and faces an uncertain future with a cancer that has no cure, focusing on slowing its progression and hormone secretion.
