Young Tongues

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.

💬 Need Support?
If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:
🌍 Website
🤝 Join support groups & mailing list: via the website
💌 Contact us: podcast@youngtonguesglobal.com

📢 Get Involved
We’re building this with our community — and you can be part of it:
✨ Volunteer & share your experience
🎙️ Apply to appear on the podcast
🧠 Take part in research opportunities

💛 Support Our Work
We’re a small charity with a big mission — and we rely on community support to keep going.
👉 Find out more how to make a donation or fundraise for us here

📲 Follow & Connect
Instagram | Facebook | TikTok | Mailing List
Hosted on Acast. See acast.com/privacy for more information.

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.

💬 Need Support?
If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:
🌍 Website
🤝 Join support groups & mailing list: via the website
💌 Contact us: podcast@youngtonguesglobal.com

📢 Get Involved
We’re building this with our community — and you can be part of it:
✨ Volunteer & share your experience
🎙️ Apply to appear on the podcast
🧠 Take part in research opportunities

💛 Support Our Work
We’re a small charity with a big mission — and we rely on community support to keep going.
👉 Find out more how to make a donation or fundraise for us here

📲 Follow & Connect
Instagram | Facebook | TikTok | Mailing List
Hosted on Acast. See acast.com/privacy for more information.

Scanxiety. If you’ve been through cancer, chances are you know the feeling all too well.

In this panel episode of The Young Tongues Podcast, Barbara is joined by Young Tongues members Kelly and Noah for an open conversation about the anxiety that can surround scans, check-ups and the possibility of recurrence.

Together, they explore what scanxiety actually feels like – from the physical tension and hypervigilance to analysing every new ache, pain or change in your body. They talk about the strange limbo of living from one appointment to the next, the agonising wait for results, and how a previous recurrence or difficult diagnosis experience can fundamentally change the way you respond to reassurance and statistics.

Kelly shares the additional complexity of scanxiety after experiencing a recurrence that was discovered on a scan, while Noah reflects on being just a few years out from treatment and learning how to balance vigilance with not allowing fear to take over his life. Barbara brings the perspective of being seven years post-treatment and how her relationship with follow-up appointments – and her own body – has gradually changed over time.

The panel also discusses access to scan results, patient portals, communication from healthcare teams, advocating for what you need from your clinicians, and the mixed emotions that come when appointments finally become less frequent. Most importantly, this is a conversation about learning to live in the space between check-ups: recognising when something genuinely needs investigating while finding ways to stop cancer from occupying every corner of your life.

💬 Need Support?
If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:
🌍 Website
🤝 Join support groups & mailing list: via the website
💌 Contact us: podcast@youngtonguesglobal.com

📢 Get Involved
We’re building this with our community — and you can be part of it:
✨ Volunteer & share your experience
🎙️ Apply to appear on the podcast
🧠 Take part in research opportunities

💛 Support Our Work
We’re a small charity with a big mission — and we rely on community support to keep going.
👉 Find out more how to make a donation or fundraise for us here

📲 Follow & Connect
Instagram | Facebook | TikTok | Mailing List
Hosted on Acast. See acast.com/privacy for more information.

In this episode of the Young Tongues Podcast, Barbara sits down with Ashleigh Sharman, a mixed methods researcher at the University of Sydney and Fellow in Survivorship and Financial Toxicity with the Clinical Oncology Society of Australia, to explore one of the most overlooked consequences of cancer: financial toxicity.

While treatment side effects are often discussed, the financial impact of cancer rarely receives the same attention. Together, Barbara and Ashleigh unpack what financial toxicity really means, from the immediate costs of treatment to the hidden, long-term effects on employment, careers, pensions, relationships and mental health.

Drawing on her research in head and neck cancer survivorship, Ashleigh explains why people affected by head and neck cancers can face unique financial challenges, including the ongoing costs of dental care, speech therapy, rehabilitation, travel, and returning to work after life-changing treatment. The conversation also explores how financial stress influences recovery, why many people delay asking for help, and how current healthcare and welfare systems often fail to support survivors once treatment has ended.

Find out more about Dr Ashleigh Sharman's work:
• ResearchGate: https://www.researchgate.net/profile/Ashleigh_Sharman2
• ORCID: https://orcid.org/0000-0002-9342-5061
• Google Scholar: https://scholar.google.com.au/citations?user=VfdRWAgAAAAJ&hl=en

💬 Need Support?
If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:
🌍 Website
🤝 Join support groups & mailing list: via the website
💌 Contact us: podcast@youngtonguesglobal.com

📢 Get Involved
We’re building this with our community — and you can be part of it:
✨ Volunteer & share your experience
🎙️ Apply to appear on the podcast
🧠 Take part in research opportunities

💛 Support Our Work
We’re a small charity with a big mission — and we rely on community support to keep going.
👉 Find out more how to make a donation or fundraise for us here

📲 Follow & Connect
Instagram | Facebook | TikTok | Mailing List
Hosted on Acast. See acast.com/privacy for more information.

In this candid catch-up episode, Barbara, Stef and Jamie begin with plenty of laughter—sharing stories about theatre, summer adventures, travel plans, social media algorithms and the realities of trying to stay cool during record-breaking heatwaves. But as always, the conversation soon turns to life after tongue cancer.

Jamie opens up about the heartbreaking struggle of trying to access restorative dental treatment following radiation therapy, exposing the frustrating realities of the US healthcare and insurance system. Together, the trio discuss the long-term impact cancer treatment can have on oral health, why restorative care is about far more than appearance, and the emotional toll of having to continually fight for care.

Barbara reflects on speaking to healthcare communication professionals about what meaningful patient involvement should look like, sharing why patient organisations deserve to be treated as valued partners rather than an afterthought. The conversation explores research quality, safeguarding, tokenism and the importance of involving patients from the very beginning of research projects.

Stef marks the anniversary of her diagnosis by reflecting on finally being believed after months of being dismissed because she was "too young" for tongue cancer.

💬 Need Support?
If you’ve been diagnosed with tongue cancer (or are supporting someone who has), you can find help here:
🌍 Website
🤝 Join support groups & mailing list: via the website
💌 Contact us: podcast@youngtonguesglobal.com

📢 Get Involved
We’re building this with our community — and you can be part of it:
✨ Volunteer & share your experience
🎙️ Apply to appear on the podcast
🧠 Take part in research opportunities

💛 Support Our Work
We’re a small charity with a big mission — and we rely on community support to keep going.
👉 Find out more how to make a donation or fundraise for us here

📲 Follow & Connect
Instagram | Facebook | TikTok | Mailing List
Hosted on Acast. See acast.com/privacy for more information.