What happened, in summary

Jeff had previously undergone extensive surgery and radiosurgery for a rare cancer involving his cervical spine in 2017. During follow-up in March 2021, a slight cough prompted a chest X-ray that showed a large mass in the lower right lung. Further testing found Stage IV non-small cell lung cancer involving a lymph node, 5 brain lesions, and bones. Review of older imaging showed that the lung mass had been present in 2017, when it was described as Stage IA and potentially operable, but it had not been included in the radiology report.

Chemotherapy and radiation were initially planned. Biomarker testing then identified an EGFR exon 19 deletion, and Jeff began osimertinib in April 2021 instead. The lung mass shrank, the brain lesions and involved lymph node showed no evidence of disease, and zoledronic acid infusions were used to strengthen bones affected by metastases.

Jeff described stable disease as a major victory after being told he might have 6 months to 1 year to live. His experiences with 2 delayed or incorrect diagnoses shaped his commitment to asking questions, requesting testing, and encouraging other patients and caregivers to advocate for themselves.