Friday 14th December 2018

I’m writing this as I travel back from Sydney, where I’ve met with international charity partners, leading researchers & oncologists, pioneering nurses, youth support workers, educators, campaigners and social workers, along with young people themselves at the 3rd Global Adolescent and Young Adult (AYA) Cancer Congress.

The Congress is the flagship activity of the AYA Cancer Global Accord - founded in 2015 by Teenage Cancer Trust, CanTeen Australia and Teen Cancer America. We’re united in striving to improve outcomes for young people with cancer and we work globally to share experience, knowledge and expertise.  

It builds on the deep foundations of the Teenage Cancer Trust International Conferences, led tirelessly by Myrna Whiteson MBE, one of our founders & life presidents.  Under Myrna’s stewardship there were eight international conferences from the mid-90s, as Teenage Cancer Trust paved the way for the growing specialism of AYA cancer. We owe them all so much. 

Hosted by CanTeen Australia, this year’s Congress brought together over 400 delegates from 25 countries. The packed programme covered all aspects of cancer care and support - before, during and after treatment – across hundreds of sessions over the three days. It was an excellent event. [I was also able to have meetings before and after the Congress to make the most of my time in Sydney. 

CanTeen is a remarkable organisation, set up by and for young people and still have young people involved at every level of the organisation today. Their Youth Leadership Programme is unique and it was a pleasure to have two of our young leaders, Aggie and Terence from the Teenage Cancer Trust Youth Advisory Group, join the Congress.  Chairing sessions and discussions is harder than giving a presentation in my opinion, but they both showed terrific skill at this! They also shared their experiences of cancer, which will live on in the hearts and minds of all the delegates who were lucky enough to hear them. 

I have so much food for thought as I fly home and there’s no way I can capture it all in one blog but I would like to share some reflections as I return to the UK. 

Cancer is totally different for young people - emotionally, physically, psychologically and economically.

There’s never a good time to get cancer, but for young people the timing is particularly cruel. Just as life is opening up cancer knocks everything off course. Young people aren’t children and they are not yet adults either – they are different and so is their cancer.  They must have us in their corner – amplifying their voices; making sure they are heard; shouting up when they can’t.   

Sometimes the most obvious truth is the best. The belief that young people need specialist treatment and support as they face cancer was the driving vision that founded Teenage Cancer Trust. It remains as true, and as needed, as ever. 

Mette, from Denmark. spoke powerfully on the first day and told us that no-one faces their cancer mountain alone. This is also true for those of us championing the needs of young people as they face cancer.  We have to be a united community – a network that pulls together to make change happen.  

Mette de Fine says:

No-one faces their cancer mountain alone.

One of the key things the Global Accord partner will work on next is updating the International Charter on the Rights of Young People with cancer. This was first written in 2010 and we’re committed to refreshing and implementing it in the years to come. 

From an opening plenary where Dr Lorna Fern, Teenage Cancer Trust’s NCRI Researcher shared new findings about the experience of young people at diagnosis, including some worrying disparities for young women; to new developments in immunotherapy; to the role of exercise during and after treatment; to Australian research on the health economics of cancer in young people (which Teenage Cancer Trust will be looking to undertake in the UK); and then on to the enormous levels of unmet need during and after treatment – fertility in particular – we may have come a long way but there’s a lot more to do. And we’re up for making sure this happens. 

We've come a long way but we've a lot more to do...Teenage Cancer Trust is ready to go!

United by shared commitment to doing all we can to change the lives of young people, together we are a force to be reckoned with. 

The next Global Congress will be in 2020, hosted by Teenage Cancer Trust in London – if you’d like to join us or be involved in some way, please register your interest.