The Invisible Cancer - Bringing Visibility to Neuroendocrine Cancer

In this episode of our 'Not Just NE Cancer Takeover Series,' we are honoured to welcome Mr Samuel Ford, a consultant surgeon specialising in NET surgery, general and upper gastrointestinal surgery, and sarcoma surgery. Additionally, he serves as the Research Committee Chair of the UK & Ireland Neuroendocrine Tumour Society (UKINETS).

Join us for an insightful conversation with Mr. Ford as we delve into the world of surgical research in neuroendocrine cancer. Discover what surgical research entails, how it's conducted, and its vital importance in advancing our understanding of this rare cancer. We explore the process of collecting and utilising data and its potential to reshape clinical practices.

We also dive into the patient's perspective, shedding light on their involvement in surgical trials within the neuroendocrine cancer community. Learn what it means for patients to be part of these trials and the impact it has on their pathway.

Further Support:

• Neuroendocrine Cancer UK
• Surgery and Neuroendocrine Cancer
• Neuroendocrine Cancer Research 
• Advancing Neuroendocrine Cancer Research Campaign

Support the show

In this episode of the 'Not Just One Cancer Takeover Series,' we had the privilege of speaking with Dr. Ben White, a specialist registrar in Gastroenterology and Hepatology. Dr. White's expertise centers on neuroendocrine cancer epidemiology. Epidemiology is the study of how diseases or health conditions spread and affects people in a population, as well as the factors that influence their occurrence. It helps us understand patterns and causes of health-related issues and is crucial in public health and medical research.

Join us for an enlightening conversation as Dr. White shares his experiences in compiling and analysing data for his recent paper. This retrospective, population-based study uncovered a staggering 371% increase in neuroendocrine cancer cases (in England), while other cancers rose by 116%. Dr. White takes us behind the scenes, shedding light on the data selection process and the essential role of epidemiological research. We also explore the exciting ongoing research in the neuroendocrine cancer field.

Further Support:

• Read Dr White's paper here
• Understanding neuroendocrine cancer
• Neuroendocrine Cancer UK
• Neuroendocrine cancer research
• Advancing Neuroendocrine Cancer Research campaign
• How we can support you

Support the show

In this episode of Neuroendocrine Cancer UK's 'Not Just NE Cancer' series, hosted by Catherine Bouvier, Julie courageously shares her journey through high-grade neuroendocrine cancer. She discusses her challenges with treatment and progression, her realistic approach to prognosis, and how she embraces positivity as a powerful coping tool, even on her toughest days.

Further support:

• Neuroendocrine Cancer UK
• Understanding Neuroendocrine Tumours
• High-Grade Neuroendocrine Cancer
• Patient Stories
• How We Can Support You

Support the show

In this episode, we have a fascinating conversation with Professor John Ramage, consultant physician in gastroenterology and hepatology at Hampshire Hospitals NHS Trust and Deputy Lead Clinician at King’s Health Partners NET Centre. Prof Ramage's research expertise lies in neuroendocrine tumours, where he investigates risk factors, epidemiology, and the quality of life for patients.

Our discussion revolves around epidemiology: what it is, why it's vital in recognising disease behaviour patterns, and how it's conducted. We dive into the sources of epidemiological data and explore how the outcomes of this research shape clinical practice. Discover how epidemiological research helps identify risk factors and gain insights into its future, including upcoming trials.

Further support:

• Neuroendocrine Cancer UK
• Understanding Neuroendocrine Cancer
• Neuroendocrine Cancer Research
• Advancing Research Campaign

Support the show

In this episode, we delve into the world of oncology research with Dr. Rohini Sharma, a  consultant medical oncologist and the oncology lead for Neuroendocrine Cancer and liver cancer at Imperial College London. 

Join us as we explore the pivotal role that research plays in advancing the realm of neuroendocrine cancer. Uncover the challenges that contribute to the scarcity of research dedicated to this less common form of cancer. Together, we'll examine the landscape of oncology research, gaining insights into its methodologies and understanding the impact it has on patients' lives.

Further information:

• Neuroendocrine Cancer UK
• Neuroendocrine Cancer Research
• Advancing Neuroendocrine Cancer Research Campaign

Support the show

In this episode, we talk to Professor John Ramage about quality-of-life research.  Prof Ramage is a consultant physician in gastroenterology and hepatology at the Hampshire Hospitals NHS Trust and Deputy Lead Clinician at King’s Health Partner's NET centre.

His research interests focus on the quality of life in neuroendocrine cancer as well as the risk factors and epidemiology of these tumours.

The discussion focuses on what quality-of-life research is and how central the patient is to deciding which parameters are included in any quality-of-life questionnaire.  It also looks at some of the challenges of recording quality of life and what being involved is like for a patient.  Current and future research projects are also discussed.  

Further support: 

• Neuroendocrine Cancer UK's website
• Neuroendocrine Cancer Research
• Advancing Neuroendocrine Cancer UK Campaign
• Neuroendocrine Cancer Support

Support the show

• Neuroendocrine Cancer UK
• Rarecan
• Neuroendocrine Cancer Research
• Advancing Neuroendocrine Cancer Research Campaign

Support the show

In this week's podcast episode, we feature Ancora.ai, a company connecting cancer patients with clinical trials and empowering them to understand ongoing trial options. 
Ancora.ai maintains a research database of all ongoing cancer trials, including neuroendocrine cancer, making it easier for patients to find personalised trial options. The podcast with CEO and founder, Danielle Ralic, explores the challenges of finding relevant clinical trials and how Ancora.ai helps overcome them. Listeners will learn about the company's serendipitous origin and the opportunities it offers for patients to understand and discuss clinical trials with their medical teams. Ancora.ai is easy to use, fast, and free, making it a valuable resource for cancer patients seeking innovative treatments.

Useful links:

• Neuroendocrine Cancer UK
• Ancora.ai
• Neuroendocrine Cancer Research

Support the show

Welcome to the latest episode of the "Not Just NE Cancer Takeover Series." Following our successful launch last week, this series continues to delve into the world of neuroendocrine cancer research, with a specific focus on our newly introduced 'Advancing Neuroendocrine Cancer Research' campaign. 

In this second episode, Campaigns Lead Lisa engages in a compelling discussion with Andy Hall, Co-founder & Chief Scientific Officer of RareCan. RareCan, a digital health company, has created an inclusive community of members who willingly share valuable information about their cancer experiences. By building cohorts, this platform empowers patients and enables researchers to locate them with a simple keystroke. Additionally, RareCan, established in 2020, provides a suite of member-designed tools that assist individuals in managing their lives while living with rare cancers.

The significance of RareCan lies in its ability to streamline the research process by facilitating the identification of individuals diagnosed with neuroendocrine cancer each year. This episode delves into the unique challenges faced within the realm of rare cancer research and sheds light on the innovative approaches undertaken by the RareCan research platform. Join Lisa and Andy as they discuss these challenges and explore the ways in which RareCan is striving to overcome them, all while offering individuals within the neuroendocrine cancer community the opportunity to actively participate in research.

Further information:

• Neuroendocrine Cancer UK
• Advancing Neuroendocrine Cancer Research Campaign
• RareCan

Support the show

NOT JUST NE CANCER TAKEOVER SERIES!

Join Neuroendocrine Cancer UK CEO, Catherine, and Campaigns Lead, Lisa, in this informative and inspiring podcast episode. Neuroendocrine Cancer UK is proud to announce the launch of their Advancing Research campaign.

Neuroendocrine cancer, a complex and less common form of cancer affecting multiple parts of the body, often leaves those living with the disease underrepresented in research studies. Recognising this critical gap, Neuroendocrine Cancer UK has taken up the mantle to drive significant changes and improve the lives of patients.

In this episode, Catherine Bouvier and Lisa discuss the objectives of the Advancing Research campaign. The campaign follows a two-pronged approach to achieve its goals:

1. Funding Practice-Changing Grants: At least three practice-changing grants will be awarded annually to support research that directly improves the lives and experiences of people with neuroendocrine cancer. These grants, open to any healthcare professional, aim to demonstrate clear benefits for patients within a 12-month timeframe.

2. Funding 'Big Question' Research: The campaign seeks to provide long-term funding for 'big question' research projects. These projects will tackle significant questions in the field, including the causes of the disease, genetic implications, genomics, reducing delays in diagnosis, and improving the understanding and management of neuroendocrine cancer. The ultimate aim is to enable access to better treatments and management options.

Tune in to this podcast episode to hear firsthand from Catherine Bouvier and Lisa as they share their passion for advancing neuroendocrine cancer research. Learn about the critical role of research in enhancing treatment options and quality of life for patients. Join the movement and discover how you can contribute to this groundbreaking campaign.

For more information on the Advancing Research campaign and the grants available, visit the Neuroendocrine Cancer UK website. Together, let's empower patients and make a lasting impact in the fight against neuroendocrine cancer.

Further information:
- Learn more about the campaign
- Learn more about research
- Get involved in the national fundraiser
- Learn more about neuroendocrine cancer

Contact Lisa - [email protected]

Support the show