The Invisible Cancer - Bringing Visibility to Neuroendocrine Cancer

In the first episode of The Invisible Cancer podcast, we hear from the voices behind the Invisible Cancer Report , exploring why greater awareness and earlier diagnosis of neuroendocrine cancer are so important. Through honest and personal accounts, guests share their experiences of living with neuroendocrine cancer, including the challenges of delayed diagnosis and the impact this can have on the...

In this episode of the Not Just NE Cancer podcast, Cathy speaks to Ruth, the incredible fundraiser and founder behind 'Daily Dip 4 Dave'. Since October 2023, Ruth has taken a cold-water dip every single day, inspired by her husband, Dave, who is living with neuroendocrine cancer. Through stormy weather, freezing temperatures and exhaustion, she’s stayed committed, raising awareness and v...

In this heartfelt and deeply personal episode, Neuroendocrine Cancer UK’s CEO, Cathy, interviews Kate Quirk and Craig Speirs. Both are not only professionals working for Neuroendocrine Cancer UK but are also living with neuroendocrine cancer themselves, thus offering rare dual perspectives on navigating cancer both personally and professionally. Kate works as our Neuroendocrine Cancer Support Co-o...

🎙️ In this episode of the Not Just NE Cancer podcast , Neuroendocrine Cancer UK CEO and Co-Founder, Cathy Bouvier Ellis sits down with Tanya Hills, Global Patient Engagement Lead at Boehringer Ingelheim. Together, they explore: Common misconceptions about the pharmaceutical industry How patient organisations and the industry can work collaboratively How effective these collaborations can be Tanya...

In this episode of the Not Just NE Cancer podcast, the first of 2025, Nikie Jervis, Neuroendocrine Cancer UK's Director of Support Services and NMC registered nurse goes back to basics to explain 'What Neuroendocrine Cancer' is. In conversation with CEO and Co-Founder, Cathy Bouvier Ellis, they discuss the function of our neuroendocrine system, how the cells work in that system and...

In the final episode of the Not Just NE Cancer podcast of 2024, our host, Cathy, chats with Kym Winter, CEO, Founder and Director of Rareminds who some of our community may already know.   In anticipation of the festive period, the new year and everything that these months entail, Kym and Cathy discuss the pressures and expectations of this time of year and how those living with neuroendocrine can...

In this episode of the Not Just NE Cancer podcast, Cathy chats with International Cancer Alliance (INCA) President, Stephanie Alband about the upcoming World Neuroendocrine Cancer Day 2024, the member organisations that make up INCA and the neuroendocrine global community as a whole. INCA Website World Neuroendocrine Cancer Day Support the show

In this episode of the Not Just NE Cancer podcast, our host, Cathy has a candid and heartfelt conversation with Sue about navigating grief after her husband, Ian passed away from neuroendocrine cancer. This episode may be upsetting for some but we hope it also provides an honest and hopeful portrayal of living life with grief and supporting your loved one to have a 'good' death. Further...

In this episode of the Not Just NE Cancer podcast, Cathy chats with patients and ambassadors, Chrissie and Caroline about their coping strategies for living with neuroendocrine cancer. This is a open conversation where Caroline and Chrissie are honest about their experience of diagnosis and treatment as well as their approach to life. Further support: Neuroendocrine Cancer UK Mental health support...

In this episode of the Not Just NE Cancer podcast, we discuss the importance and realities of self-advocacy while living with neuroendocrine cancer. Join us as we explore the challenges and triumphs of advocating for oneself in the healthcare system.  Join us for a truly insightful conversation with two of Neuroendocrine Cancer UK's Ambassadors, Lisa and Alan. Lisa and Alan share their person...

In this episode of the Not Just NE Cancer podcast, Cathy speaks with Jane and Carolyn about their experiences with neuroendocrine cancer treatment.  Jane discusses her journey with CAPTEM, PRRT and now four-weekly Lanreotide, while Carolyn shares her story of initially receiving chemotherapy (wrongly), then moving to a watch-and-wait approach, Lanreotide, and finally PRRT through a clinical trial....

In this episode, Neuroendocrine Cancer UK's CEO, Catherine Bouvier, talks with Clinical Lead Dietitian, Yasmin Chotai de Lima, about crucial topics related to nutrition and neuroendocrine cancer. They provide advice on coping with the PERT shortage, offer insights on different diets, and share strategies for managing constipation and deficiencies. They also introduce new dietary guidelines fo...

In this episode of the "Not Just NE Cancer" podcast, host Cathy sits down with Porfessor Martyn Caplin, Gastroenterologist, Neuroendocrinologist and Neuroendocrine Cancer UK Patron, for an insightful conversation about the development of understanding and care for neuroendocrine cancer. Prof. Caplin discusses how artificial intelligence (AI) could revolutionise medicine and improve the e...

Delve into the complexities of clinical trials within the rare disease landscape in this podcast episode. Explore firsthand the journey of a patient participating in a pharmaceutical trial and gain valuable insights into initiating conversations about accessing clinical trials. Discover the significance of patient registries and the genesis of the Rarecan organisation, dedicated to supporting indi...

In this insightful podcast episode, Catherine Bouvier, CEO of Neuroendocrine Cancer UK, engages in a heartwarming conversation with Rachael, a resilient mother who navigated the challenges of work, pregnancy, and motherhood following a diagnosis of neuroendocrine cancer at the young age of 32.  Rachael shares her journey, which began shortly after moving into a new home with her fiancé, as she dea...

Join Nikie from Neuroendocrine Cancer UK as she sits down with Sarah Peart, a Sexuality Educator currently pursuing a master's degree in Clinical Psychosexology. Sarah's empirical dissertation delves into the often-overlooked realm of how cancer impacts sexual well-being, transcending the boundaries of cancer types traditionally associated with reproductive or sexual organs.  In this enl...

This marks the first episode of the 2024 'Not Just NE Cancer' podcast series. Host Catherine Bouvier and guest Peter Gwilliam reflect on the last 21 years of Neuroendocrine Cancer UK. Peter, the Chair Trustee of Neuroendocrine Cancer UK and co-founder, shares insights into the organisation's evolution. In the late '90s, after Peter's wife Liddy received a diagnosis, their...

In this week's podcast, we delve into genomics research with Professor Chrissie Thirlwell, a cancer genomics and Head of the Medical School at the University of Bristol. She is also a Consultant Medical Oncologist, Secretary of UKINETs, and Co-Chair of the NET Research Foundation USA Board of Scientific Advisors. Professor Thirlwell emphasises the pivotal role of research in enhancing our und...

In this special one-off podcast, join us for a heartfelt narrative, narrated by Neuroendocrine Cancer UK's, Specialist Nurse, Nikie, as we remember and celebrate the life of Andrew Cheetham. This poignant story, written by his wife, Faye, reflects their journey filled with love, dreams, and the challenges of facing neuroendocrine cancer. Discover how they navigated life's ups and downs,...

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. Fo...

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 influenc...

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:...

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 discu...

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...

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 tumour...