Oracle Cancer Trust has partnered up with peer-to-peer support group the Young Tongues to set up the Young Tongues Fund.
This fund will support the patient focused activities of the peer-to-peer support group the Young Tongues, awareness campaigns and research that will provide more understanding of Tongue Cancer in young patients, how best to treat them and where the greatest unmet needs are.
The Young Tongues are the only support group dedicated to young Tongue Cancer patients and survivors and with that has become a life-line for many. for many, who are entirely funded by donations and receive no government support.
A study, published in Oral Oncology, showed a significant increase in the incidence of Tongue Cancer in people under 45, particularly in young women without risk factors where the incidence has risen by a staggering 385% over 32 years.
There has been an explosion of Tongue Cancer in the younger patient population and although there has been an HPV related increase in orophangeal cancers, the cause of an increase in cavity tongue cancer is unknown.
Vital resarch is needed to provide more understanding of Tongue Cancer in young patients, how best to treat them and where the greatest unmet needs are.
The Young Tongues are a global peer-to-peer support group for Tongue Cancer patients aged 18 - 64.
They are a growing community that primarily comes together on social media. It's private Facebook Group and WhatsApp channels are a safe space for patients and survivors to exchange experiences and ask for support.
This group has provided an invaluable wealth of information that has helped me through surgery and is now helping me through my chemo and radiation treatment. Hearing from those who have been through surgery and treatment and also hearing from those who are still going it has really helped me to know what to expect and know what to look out for. Everyone in the group is amazingly supportive and it helps so much to be able to interact with those who are going through/have been through the same things as me.
They also organise monthly virtual meet ups and annual in person meet ups in the UK and USA. They are keen to host more in person meet ups globally.
One thing that makes the Young Tongues particularly unique is that they use the experiences exchanged and learnings gathered in their chats and turn these into practical and helpful social media content (Instagram, Facebook, Twitter and TikTok).
Tongue Cancer is awful and there are so few resources out there for people ‘like us’ - finding this group was a life saver. This group is an amazing support - the knowledge and experience of everyone here is fantastic. It’s the only place where people going through similar treatment and it’s side effects can openly share our stories and help each other. It’s supported me through some very dark days (in the middle of chemo/radio and after major surgery) and it’s connected me with others who are coping with the same issues, so I know I’m not alone.
In 2023 they launched their Young Tongues podcast co-hosted by founder Barbara Fountain and Jamie Rae Powell.
Listening to the podcast and I love this!! I'm literally close to tears because it's like finally a space for us women who had cancer that's not breast cancer. Because our journey is so different from everyone else and it's hard have others understand. We were told we may never speak again and share similar stories. And to have two amazing women host a podcast!! A PODCAST!! If this was around when I was diagnosed 7 years ago I would of felt less alone."
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