There are so many areas of CRUK research which rely on the involvement of patients in studies and trials. Here, one family share their story of why and how they got involved.
Mark Sims was 15 when he was first diagnosed with melanoma in 2003. When it came back 12 years later, it spread and became incurable. A doctor from near Bristol, Mark signed up to be part of our PEACE study, which will help us understand more about the late stages of cancer. He was an enthusiastic volunteer for CRUK, and was given a Flame of Hope award for his work. Mark died in January 2017. His twin Dave, 29, a doctor living in London, shares Mark’s story on behalf of their parents, Chris and Sue, brothers Matt and Paul, and Mark’s fiancée, Georgie.
“Mark always thought about others more than himself. Even in his last days, he was worried about not being able to reply to people who’d messaged him on Facebook. Everyone liked Mark. He was very easy to get on with and had a lot of friends. He realised that his experience of getting cancer so young, and the fact he was a doctor, would resonate with people.
When Mark’s doctors asked him about taking part in the PEACE study, we knew it would be something he’d want to do. The study gave him another opportunity to help people. The tissue he donated, before and after he died, will help scientists learn about how cancer develops, particularly in the later stages. It’s a great contribution to research. He wanted to do as much as he possibly could to make sure that, in 20 years’ time, another Mark Sims doesn’t have to go through the same thing that he did.
When Mark found out how serious his diagnosis was, he accepted it. He remained hopeful, but realistic. He wanted to do the best he could in the time he had.
As well as raising money for research, it’s really important to my family to raise awareness of melanoma. One of my main motivations for sharing Mark’s story is to encourage people to take care of their skin. We are all really proud of everything Mark did. He inspired us. It’s always going to be difficult without him, but the difference he’s made to other people does make it a little bit easier.”
A national post-mortem tissue collection protocol (The PEACE study)
This Award, led by Professor Charles Swanton at the CRUK UCL Centre and the Francis Crick Institute, will support the longitudinal collection of biological samples from patients with primary brain or metastatic cancer across the UK, including after their death. Sample collection will comprise tissue, blood, cell-free DNA and circulating tumour cells.
The consortium will:
- Coordinate and standardise sample collection across the network
- Create a digital pathology hub from the samples
- Train clinical researchers in autopsy pathology
This will create a unique resource of samples, supported by clinical annotation, to investigate through research initiatives such as understanding the evolution of cancer, intratumour heterogeneity, mechanisms of resistance, as well as identification of prognostic and diagnostic markers.