Nick Massey was just 16 years old when he was diagnosed with Ewing sarcoma, the second most commonly diagnosed bone cancer in Teenagers and Young Adults (TYAs).
With the help of researchers, clinicians and patients like Nick, we have recently updated our Guide to Ewing sarcoma to help TYAs better understand their diagnosis and what to expect on their cancer journey. Below Nick shares why it was so important for him to be involved in this process.
Why did you want to review the Ewing sarcoma booklet?
I wanted to help with the production of a booklet that provided information which I felt I needed when I was diagnosed, but was never able to find. At diagnosis you have so many questions, and it can be incredibly hard to find a reliable source. The Bone Cancer Research Trust's booklet aims to tackle this and I was more than happy to be involved.
This booklet has been awarded the PIF TICK for quality healthcare information. Why do you think this is important?
It provides evidence that the information in the booklet is both accurate and clearly presented. Despite a number of different websites providing varying information, large parts of it is either out of date, lacking evidence, or presented in a poor way. The PIF TICK is a clear sign that these problems have been addressed by the Bone Cancer Research Trust.
What impact do you think this booklet will have on other patients and their families?
The booklet will be hugely useful for patients and their families who have never heard of Ewing sarcoma before as it's a well written source of information.
To find out more about Nick's journey, please click below: