Last week on The Young Tongues Podcast, Dr Patrick Ha helped us understand the science behind adenoid cystic carcinoma (ACC) – an incredibly rare form of cancer that can affect the tongue.

This week, we hear what it can actually mean to live through it.

Barbara is joined by Young Tongues member Sonya, who was diagnosed with ACC at the base of her tongue four years ago after experiencing jaw pain for several years and initially being treated for TMJ. Her eventual diagnosis came in terrifying circumstances, following a medical emergency that nearly cost Sonya her life. She went on to undergo a 100% glossectomy and laryngectomy, followed by radiotherapy, and today continues to live with and receive treatment for metastatic disease in her lungs.

But this episode is about so much more than cancer treatment.

Sonya speaks with remarkable openness – and plenty of her trademark humour – about losing her tongue and natural voice, learning to communicate differently, adjusting to a completely changed relationship with food, stepping away from a career that had been central to her identity, and figuring out who she was when productivity could no longer define her worth.

A central part of Sonya's story is voice banking and virtual voicing. Before surgery, she had just a few weeks to discover that voice banking even existed and record as much of her voice as she could. Today, advances in AI allow Sonya to communicate using a cloned version of her own voice – technology she says has given her not only a voice, but confidence, independence and a sense of identity.

If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:

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