Cancer Research UK is investing the money over the next 5 years into a partnership between Oxford’s Oncology Clinical Trials Office (OCTO) and the Primary Care Clinical Trials Unit (PC-CTU) to deliver a portfolio of precision prevention and early detection cancer trials and become the first dedicated unit in the UK to do so.
By taking this approach, Oxford researchers aim to reduce the burden of cancer care on the NHS.
I am delighted that we have been awarded this funding from Cancer Research UK. This investment will allow us to work with scientists within and outside Oxford to develop ways to prevent cancer or detect it at earlier stages. This is particularly important for people who have risk factors and who currently live in fear in developing cancer. By working closely with our Primary care team, we intend to increase our geographical reach to involve people across the entirety of the UK. - Professor Sarah Blagden, Director of OCTO at the University of Oxford
Currently, nearly half of all cancers are diagnosed at a late stage when they are harder to treat successfully. The Oxford team will trial new strategies for detecting cancer earlier, including multi-cancer early detection tests such the one evaluated in the recently publicised SYMPLIFY study. The funding will also allow Oxford scientists to undertake so-called precision prevention trials – trials of targeted preventative therapies in groups of people at a defined higher risk of cancer. People with cancer risk factors include those with genetic conditions.
One of the first Precision Prevention trials to come from this team is the Metformin in Li-Fraumeni (MILI) trial. The MILI trial will test the effectiveness of the antidiabetic drug metformin at reducing cancer rates in those with the genetic condition Li-Fraumeni Syndrome (LFS) who currently have an almost 100% risk of developing cancer during their lifetime. The study is due to launch this summer and is funded by the NIHR (National Institute for Health and Care Research) and Medical Research Council (MRC) partnership with additional support from Cancer Research UK.
LFS is a rare genetic condition caused by a mutation in a gene called TP53, either inherited from a parent or occurring as a new mutation at conception.
Prof Blagden explained: “Currently there are no treatments to prevent cancer in those with Li-Fraumeni Syndrome (LFS). The MILI trial aims to enrol 224 patients with LFS in the UK. A parallel trial will be run in the US too”.
Swansea mum of two, Steph Phillips, described her experiences when she discovered that her husband Ceri and both of their daughters had LFS.
Steph believes the MILI trial offers much needed hope for her daughters and the LFS community.
What Sarah and the team at Oxford offer in developing the MILI Trial, is hope. And hope is such an incredibly powerful thing. Early detection is hugely important but prevention has to be the ambition. As a trustee of The George Pantziarka TP53 Trust who will be supporting those participating in the MILI Trial, and with my daughter able to hopefully enrol in the trial when she turns 16, it is an absolute privilege to be highlighting and supporting this trial in the knowledge it has the potential to both change and save lives for generations to come. - Steph Phillips, mother of two girls with Li-Fraumeni Syndrome
Tragically, Steph's husband Ceri died of liposarcoma in November 2019 at the age of 43. As daughter Ava had been treated for rhabdomyosarcoma when she was 20 months old, concerns were raised that having two rare sarcomas in the immediate family could be due to a genetic fault.
Ava was tested in June 2020 at the age of 12 and her results came back positive for Li-Fraumeni Syndrome, followed by a positive test for Steph’s younger daughter Amber, age 8, in December 2020.
Steph, who works as an HR director, explained: “There is still so much stigma and fear associated with cancer. When Ava was diagnosed, as a first-time mum, I felt overwhelming guilt, not knowing what I had done wrong in caring for her, alongside a complete lack of control.
“For me personally, I’m not sure you ever completely get over the trauma of a cancer diagnosis. As Ava’s oncologist told me “you lose your innocence”. It’s incredibly hard to focus on a future with such uncertainty.
“Over time we had learned to move forward, with a level of perspective and appreciation of life often found in those who have lived through similar circumstances.
Steph added: “Ceri’s diagnosis was a complete shock, he was young and fit. His very mild symptoms were initially diagnosed as seasonal asthma before further investigation ultimately revealed a tumour in his chest cavity. By the time was discovered it was inoperable and we lost him just 7 weeks later.
“Learning that the girls both have LFS is life-changing, in every sense. Especially as currently, there are no treatment options to either reduce or remove the risk. However, we firmly believe that knowledge is power and I have been able to work closely with our local Paediatric Oncology team in Cardiff to set up routine surveillance which is a positive step forward.
“Both my daughters fully understand the impact of LFS and the fact that this is something they will live with. For me, as their mum, it’s important they also understand they can live a meaningful life too, their hopes and dreams are still valid and achievable. LFS doesn’t have to define them although it’s a huge weight to bear. I continue to be immeasurably proud and humbled by their resilience and optimism.”