Most conversations about tongue cancer – including many on The Young Tongues Podcast – focus on squamous cell carcinoma (SCC). But SCC isn't the only cancer that can affect the tongue.
In this episode, we're turning our attention to an even rarer diagnosis: adenoid cystic carcinoma (ACC).
As the number of people affected by ACC within the Young Tongues community grows, we wanted to better understand this very different disease and give our community reliable, accessible information from someone who knows it well.
Barbara is joined by Dr Patrick Ha, Chief of the Division of Head and Neck Surgical Oncology at the University of California, San Francisco, whose research includes the molecular changes that occur in adenoid cystic carcinoma.
Together, they take ACC right back to basics. What exactly is it? How can a cancer of the salivary glands affect the tongue? How does it differ from the much more common SCC – and why can diagnosis sometimes be so difficult?
They explore how ACC behaves, including its tendency in some people to grow slowly while still carrying the possibility of recurrence or metastasis many years later. Patrick explains perineural invasion, staging, surgery, radiotherapy and why long-term surveillance can look very different for someone with ACC. They also tackle one of the hardest concepts for patients to come to terms with: why doctors may sometimes choose to monitor metastatic ACC rather than treat it immediately – and how balancing treatment against quality of life can make “watch and wait” the right clinical decision, even when psychologically it can be incredibly difficult.
The conversation also covers prognosis and why population statistics don't necessarily tell an individual patient what their future will look like, before turning to research and some of the emerging science offering hope for more targeted ACC treatments in the future.
🎙️ This is the first of two Young Tongues episodes dedicated to ACC. In our next episode, we'll move from the clinical perspective to lived experience, as Young Tongues member Sonia shares her own story of living with ACC.
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