🎙️ 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 also highlights a current clinical trial led by Boehringer Ingelheim for Extrapulmonary Neuroendocrine Carcinoma (EP-NEC). You can find more information about this trial here:

 🔗 Boehringer Ingelheim – EP-NEC Clinical Trial

To learn more about ongoing neuroendocrine cancer research, visit our website:
 🔗 Neuroendocrine Cancer UK – Research

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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 how they play an important role in the sending and receiving of messages from either our brain or endocrine system.

If you've been searching for a clear explanation of what neuroendocrine cancer is, look no further. We hope you enjoy this episode and please keep an eye out for future episodes which will be released every 2 months throughout 2025.

Click here for further reading on what neuroendocrine cancer is. 

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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 cancer can navigate festivities whilst experiencing disruptive or difficult symptoms and emotions.

We also have a webinar available on this topic, which includes discussion on managing fatigue at this time of year. Please click here to watch.

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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

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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 support:

• Neuroendocrine Cancer UK
• Dealing with grief

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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

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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 personal journey, offering an honest account of navigating medical appointments, seeking the best treatment options, and dealing with the emotional ups and downs that come with being your own advocate. 

Tune in for an engaging and thought-provoking discussion on the importance of self-advocacy and the impact it has on the cancer journey.

Further Support:

• Neuroendocrine Cancer UK
• Article Reference
• Neuroendocrine Cancer UK Virtual Handbook.

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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. They delve into accessing these treatments, managing side effects, and the level of autonomy patients have over their treatment options. Tune in for their insightful experiences and perspectives.

Further Support:

• Neuroendocrine Cancer UK
• Neuroendocrine Cancer Treatments 
• Neuroendocrine Cancer Support

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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 for neuroendocrine cancer, developed with input from an international multidisciplinary team, and discuss managing hypoglycemia for those diagnosed with diabetes. Tune in for valuable tips and expert guidance!

Further Support:

• Neuroendocrine Cancer UK
• Understanding Neuroendocrine Cancer 
• Diet and Nutrition

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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 early diagnosis of rare diseases. He shares his journey into the field of neuroendocrinology, recalling the beginnings of UKINETS and ENETS, and highlighting key contributors along the way.

They reflect on the significant milestone of hiring the first Specialist Nurse for neuroendocrine tumours in the UK, a role Cathy proudly took on. Dr. Caplin also reveals his greatest achievements to date and shares his thoughts on the vital role of specialist nurses in patient care.

Looking to the future, Cathy and Prof. Caplin discuss the need for more clinical trials with less bureaucracy and the potential for greater use of molecular profiling in advancing neuroendocrine cancer treatment.

Join us for this engaging episode to learn more about the past, present, and future of neuroendocrine cancer care.

Further Support:

• Neuroendocrine Cancer UK

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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 individuals with rare diseases.

Intrigued? You too can contribute to RareCan's impactful work. Select here to learn how to get involved. 

Further Support:

• Neuroendocrine Cancer UK 
• RareCan
• Neuroendocrine Cancer Research
• Find a clinical trial

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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 dealt with persisting symptoms eventually diagnosed as small bowel neuroendocrine tumours. Despite the diagnosis, Rachael's story takes a hopeful turn following successful treatment and her wedding to her supportive partner. 

Wanting to start a family, Rachael faced tough decisions regarding the feasibility and ethics of pregnancy post-treatment. Through open communication with her medical team and thoughtful consideration, Rachael and her husband welcomed their first child.
 
Rachael candidly reflects on the realities of being a full-time working mother, sharing insights on pregnancy, and joyfully reveals her anticipation of welcoming a second child.

If this story touches you and you're facing challenges such as infertility due to cancer, please know that we are here to support you. 

Further Support:

• Understanding Neuroendocrine Cancer
• Neuroendocrine Cancer Diagnosis 
• Small Bowel Neuroendocrine Cancer
•  Living with Neuroendocrine Cancer
• Working with Neuroendocrine Cancer
• Sex and Neuroendocrine Cancer

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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 enlightening conversation, Sarah and Nikie shed light on the profound effects cancer can have on an individual's sexual health, revealing the significant gap in education and knowledge surrounding this topic. Despite strides in recognising the emotional toll of cancer, sexual health remains largely ignored, leading to a decline in sexual activity post-diagnosis and subsequent impacts on mental health, body image, and relationships.

 
They explore the intersection of cancer, including neuroendocrine cancer, and chronic illness, looking at life beyond diagnosis and treatment, navigating physical and mental health adjustments to addressing symptoms such as fatigue and alterations in bowel habits. . . and the repercussions on partners. Sarah highlights the pivotal role of research in advocating for comprehensive sex education interventions.

 Sarah encourages individuals affected by cancer to participate in her study, laying the groundwork for transformative education and support initiatives. Join the conversation to explore the often-overlooked intersection of cancer and sexuality.

Further support:

• Neuroendocrine Cancer UK 
• Living with Neuroendocrine Cancer
• Follow Sarah on Instagram, LinkedIn, and Twitter.
• Take part in the Study on The Sexual Well-being of Women Dealing with Cancer Research Study

The Study:
To take part in this study you must be above the age of 18, biologically female, and have been diagnosed with cancer in the last 5 years. Before your diagnosis, you were sexually active and pre-menopausal (current menopausal status is not relevant).

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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 journey unfolded. Liddy, a Comedy Director known from 'Drop the Dead Donkey,' faced a turbulent diagnosis of neuroendocrine cancer, then known as Carcinoid. Recognising the lack of information and experiencing the isolation of an uncommon cancer diagnosis, Peter, Liddy, and a small group established a support network, envisioning a close-knit community offering mutual support.

Following Liddy's passing, Peter was determined to carry on their work. In 2006, Peter met with two neuroendocrine cancer patients, Andy Geech and Catherine Kalamis, along with Catherine Bouvier (now Neuroendocrine Cancer UK's CEO). At the time, Catherine was a specialist neuroendocrine (NET) nurse. This meeting led to the creation of the charity then known as NET Patient Foundation.

In this episode, Catherine and Peter offer a glimpse behind the scenes, unraveling the history of Neuroendocrine Cancer UK. They emphasise the role and significance of charity trustees, tracing the journey from the inaugural support group meeting in Birmingham in 2002 to a helpline receiving a handful of calls to now supporting the entire nation with over 200 support groups.

Twenty-one years later, despite numerous achievements, challenges persist in achieving earlier diagnosis and awareness. Catherine and Peter delve into some exciting projects and campaigns planned for 2024.

Further information:

• Neuroendocrine Cancer UK

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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 understanding of medical science and shaping comprehensive patient care across various medical disciplines. The discussion unfolds to reveal the intriguing collaborations she engages in and the groundbreaking discoveries emerging from these partnerships.

This captivating conversation provides an insightful overview of genomics, elucidates distinctions between genomics and genetics, and explores how such research can significantly enhance clinical practices, shaping the future of patient care.

Further Support

• Neuroendocrine Cancer UK
• Neuroendocrine cancer research
• Advancing Neuroendocrine Cancer Research Campaign

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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, cherished family moments, and the profound impact of Andrew's legacy. We invite you to listen to this touching tribute as we honour the memory of Andrew.

We are also excited to announce the release of a special digital toolkit, coming in November 2023, made possible through Faye's tireless fundraising efforts for Neuroendocrine Cancer UK. This toolkit will provide valuable resources and support for those affected by neuroendocrine cancer, serving as a powerful legacy for Andrew and a testament to Faye's meaningful support.

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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

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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

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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

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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

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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

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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

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

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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

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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

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