The Invisible Cancer - Bringing Visibility to Neuroendocrine Cancer

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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