Adenoid Cystic Carcinoma: The Rare Cancer That Almost Went Undiagnosed

Alyssa was diagnosed with adenoid cystic carcinoma in September 2024. Her diagnosis followed months of unrelenting jaw pain that was repeatedly dismissed as a TMJ disorder or stress. Alyssa’s first symptoms emerged during her third pregnancy, but the pain persisted postpartum. Being a dental hygienist, she knew her symptoms did not align with a TMJ disorder. Despite her advocacy, she encountered multiple misdiagnoses and ineffective treatments until she insisted on specific imaging, which revealed a tumor in her parotid gland.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Alyssa underwent a biopsy, which was inconclusive, prompting her to proceed with surgery. The operation lasted over four hours as the surgeon carefully removed the 3 cm tumor entangled with her facial nerve, preserving nerve function. Post-surgery, Alyssa faced radiation therapy, undergoing 20 sessions at Huntsman Cancer Institute. The treatment, though effective, caused side effects like dry mouth, taste changes, sore throat, and significant skin irritation.

Her experiences with adenoid cystic carcinoma were mentally taxing, intensified by anxiety stemming from prior health challenges, including a near-fatal postpartum infection and a life-saving hysterectomy. Alyssa leaned on therapy, visualization techniques, and her faith to navigate the isolation of radiation and the emotional toll of her journey.

She emphasizes trusting one’s instincts and knowing one’s body while advocating for persistence in seeking answers. Despite challenges, Alyssa remains resilient, finding strength in her family, faith, and the hope of inspiring others to persevere.

• Name: Alyssa N.
• Age at Diagnosis:
  • 31
• Diagnosis:
  • Adenoid Cystic Carcinoma
• Symptoms:
  • Persistent jaw pain
  • Lightning-like facial pain during the first bite of meals
• Treatments:
  • Surgery: tumor removal
  • Radiation

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

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