What is Neuroendocrine Cancer?
In February 2022 The Filmer family and the Royal Free Charity established the Miranda Filmer Fund for research into neuroendocrine cancer. We are grateful to a number of deeply generous donations from philanthropists and friends for the wonderful amount raised so far.
Many have never heard of neuroendocrine cancer, sometimes referred to as ‘the quiet cancer’ because it presents so late and advanced. It currently impacts over 15,000 people in the UK and can affect anyone, of any gender, and at any age.
An early diagnosis and early treatment can significantly improve outcomes, but NETs (neuroendocrine tumours) may take years to present and to diagnose.
Symptoms often go unrecognised as tumours can present anywhere in the body and symptoms can vary between individuals.
Not many doctors know a lot about NETs, so like Miranda many will endure extensive periods of unidentified excruciating pain without a diagnosis. Raising aware amongst GPs and the NHS is crucial.
In this 20 minute video professor Martin Caplin explains to three physicians from UK, Turkey and USA how and why NETs are problematic to diagnose Think_NENs_28_02_V3.mp4 - Think_NENs_28_02_V3.mp4 - Frame.io
Honouring Miranda’s memory through pioneering research
There are many different kinds of neuroendocrine tumour, ranging from low grade neuroendocrine tumours to aggressive high grade neuroendocrine neoplasms. Where people diagnosed with low grade neuroendocrine tumours can live between eight and 16 years with the disease, those with high grade neuroendocrine neoplasms survive on average only seven months.
Miranda defied all the odds, living a rich and full life for several years following her diagnosis of high grade neuroendocrine neoplasms. Now the research funded in her memory will help clinicians to understand more about how this devastating type of tumour develops, with the hope of directing future clinical trials in this area, and opening up new treatment possibilities for patients.
Professor Martyn Caplin introduces the research program https://youtu.be/48gvT-vYtpQ
The research program will Improve the understanding of fast-growing NETs and improve treatment options for individuals.
1. It will explore why some cells are more aggressive than others, why they show a tendency to change their structure, and why they therefore change their response to the treatments available.
2. Advancing the use of genomic profiling in the treatment of NETs. Genomic profiling allows researchers to understand the genes in a person or a specific cell type, and how they interact with one another and with the environment. This could lead to a greater understanding of why tumours present so aggressively in some patients and not others.
3. Advancing molecular imaging in the treatment of more aggressive NETs. The research would seek to include better ways of imaging the cancers and assessing targets that could be used for therapy.
4. Developing better personalised treatments. This would mean therapy could be targeted to the individual at an earlier stage, improving outcomes.
This research will be carried out in the UCL laboratories and clinical oncology department at the Royal Free Hospital. As a direct result of the extraordinary funds raised through the appeal to date, we have an exceptional clinical fellow leading this exciting work. The team aim to submit preliminary research data to ENETs (European Neuroendocrine Tumour Society) later this year for presentation in March 2025.
Further funding would enable us to take the next vital step: bringing this research out of the lab and into clinical practice to help patients. We could recruit a second clinical fellow to expand the remit of the research. The team could then start to construct predictive testing models to identify both targeted therapies and immunotherapies which could be used to treat neuroendocrine tumours.
To leverage collective impact, the Neuroendocrine Tumour Research Unit intend to work closely with other NET centres of excellence, so that the clinical trials they develop as a result of their laboratory-based research can be delivered at other centres to help more patients.
The data will be the basis for further applications to major grant funders to maximise the impact of the Miranda Filmer Fund. Your early-stage support in this pioneering research will help to provide the evidence and data required to attract and draw on additional funding streams, thereby expanding this research – both in the laboratory and in clinical practice.
This research program will change the outlook for patients diagnosed with the most aggressive forms of neuroendocrine cancer, improving clinical understanding of the condition, and offering hope of new life-changing new treatments to the patients of tomorrow.
Charity Number 1165672
Professor Martyn Caplin
Royal Free Hospital
“It is called ‘the quiet cancer’ because it often grows quietly and is not picked up until late ”
Professor Martyn Caplin leads the Royal Free London’s European Neuroendocrine Centre of Excellence, and scientific and clinical research programmes into neuroendocrine tumours (NETs).
He is currently the chair of the European Reference Network for Rare Cancers’ Neuroendocrine Tumour Committee.
He is founder and past chairman of the UK and Ireland Neuroendocrine Tumour Society (UKI NETS) and received its lifetime achievement award in recognition of his clinical leadership and research in the field of NETs.
He has published more than 200 peer-reviewed papers, written many book chapters and co-authored two books.
“Miranda was an inspirational patient, who continued to live life to its fullest right up until the very end. She exceeded all expectations for people diagnosed with aggressive neuroendocrine tumours, and can offer hope to future generations of patients”