Thursday 9th June 2016

Over half (56%) of young people who have finished cancer treatment feel that they are not provided with enough quality written information about what happens next, according to our new research. The research also found that more young patients feel afraid of their cancer returning and anxious about the future, than feel happy that their treatment is over.

The research, conducted at our Find Your Sense of Tumour Conference, looked into post-treatment support for young people with cancer. It is released ahead of our next event for under 18s running 1-3 July.

Over a third (39%) of the 180 young people polled stated that they were not given any written information on moving forward following the completion of their cancer treatment.

When asked what information they would find useful after treatment, over two thirds (70%) wanted information on getting back to work and university as well as what signs to look out for to indicate the cancer had returned. Two thirds (65%) of those asked also wanted information on how to stay healthy.

Aside from receiving written information, nearly half (46%) of those polled said that an event where you could ask questions and share experiences would have been helpful. Over half (53%) said that an appointment with a doctor or nurse to talk through their treatment and how it might affect them would also have been useful. A further two thirds (63%) said they would have benefitted from advice on nutrition and fitness to return back to work.

The survey also looked at the emotional impact of cancer upon young people. Nearly two thirds (63%) said that, on completing treatment, they were scared about their cancer returning. 

6 out of 10 (60%) young people polled said that they were anxious about what happened next once their treatment was complete.

Teenage Cancer Trust’s Find Your Sense of Tumour conference is a weekend away for young people who’ve had cancer, and includes informative presentations by experts on a range of issues that young people with cancer are dealing with. It also offers the opportunity for young people to be themselves, sometimes after months or years of struggling to express themselves or worrying about upsetting people if they say the wrong thing. Being surrounded by people who understand is a powerful experience and many lifelong friendships are formed there. The conference is also a chance to have some fun away from home.

Former teenage cancer patient, Chloe Parsons, (pictured above and left) 24, who had bone cancer at 13, said:

"I have seen first-hand the positive impact of the weekend on those who are recovering or in treatment for cancer. In the outside world, I felt like the cancer girl who had low confidence and no aspirations for the future. However, at FYSOT you are part of a community where you become an individual again where meeting others who have gone through similar experiences can really help you to deal with difficult times and move on together."

Meeting others who have had the same type of cancer as you is like finding your long lost twin as you feel you have so much in common and you’re not on your own. The weekend is filled with motivational talks which you can relate to, learn more about cancer and how to get back into 'normal life' again. There are also fun activities and lots of laughter which people you feel like you have known forever. I am really looking forward to speaking about my experiences.

Simon Hewett–Avison, Teenage Cancer Trust’s Head of Support, said: “Teenage Cancer Trust’s Find Your Sense of Tumour Conference is the only event of its kind for young people with cancer in the UK. It brings young people together with others who have been through a similar experience to provide invaluable support.

“The results of our poll show how incredibly vulnerable and unsure young people can feel once they come through treatment and are catapulted back into their old lives. Thanks to the generous support of The Queen’s Trust, we’re proud to offer young people who’ve had cancer the opportunity to spend time with peers and support each other. They can ask questions to our panel of experts on anything worrying them, from keeping healthy, to returning to work. We hope to ensure all young people with cancer know about and have the chance to attend.”

Find out more about the conference, send us an email or call 020 7612 0370.