Eleanor was 46 when a pancreatic NET was found in 2017. Told surgery would be too risky at The Royal Marsden, she was referred to King's ...
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Personal stories offering insight, understanding and connection through shared experiences of neuroendocrine cancer.
Living with neuroendocrine cancer can be complex, challenging, and deeply personal. While everyone’s experience is different, no one should have to face it alone.
This space is for people living with neuroendocrine cancer, and for those who love and care for them, to share experiences, find understanding and feel heard.
Eleanor was 46 when a pancreatic NET was found in 2017. Told surgery would be too risky at The Royal Marsden, she was referred to King's ...
Tom was 27 when a pancreatic NET changed everything. For seven months he had been told his pain was health anxiety and too many fizzy drinks. ...
Professor Tahir Shah trained in general medicine, gastroenterology and liver medicine, and spent four years researching liver disease and new treatments for neuroendocrine tumours before joining ...
In this episode, Lisa is joined by Dave and Stephanie, parents to six-year-old Elliott and three-year-old Oliver. Dave was diagnosed with neuroendocrine cancer just one month ...
Eleanor was 46 when a pancreatic NET was found in 2017. Told surgery would be too risky at The Royal Marsden, she was referred to King's ...
Katie was diagnosed in October 2015 with a pancreatic primary and went through a distal pancreatectomy, liver ablation, PRRT and more before transplant was ever discussed. ...
Alison was diagnosed with a small bowel NET in autumn 2022 and treated at the Royal Free London. A liver transplant was first mentioned by her ...
Tom was 27 when a pancreatic NET changed everything. For seven months he had been told his pain was health anxiety and too many fizzy drinks. ...
Written by her daughter Rhiannon and her dad, Olwen's story begins with a scan in May 2019 to investigate internal bleeding. She was diagnosed in August ...
In July 2019 Stephanie's husband David was diagnosed with neuroendocrine cancer at 26. She writes about the consultant who asked 'Why are you crying, he isn't ...
Professor Tahir Shah trained in general medicine, gastroenterology and liver medicine, and spent four years researching liver disease and new treatments for neuroendocrine tumours before joining ...
Bobby Dasari is a consultant liver transplant and hepato-pancreato-biliary surgeon at Queen Elizabeth Hospital Birmingham. He explains why neuroendocrine tumours, with their diverse biology, are such ...
Reza Mirnezami performs around 30 to 40 NET resections a year as a consultant colorectal and neuroendocrine tumour surgeon at the Royal Free Hospital, and chairs ...
In this episode, Lisa is joined by Dave and Stephanie, parents to six-year-old Elliott and three-year-old Oliver. Dave was diagnosed with neuroendocrine cancer just one month ...
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 ...
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 ...
Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.
Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.
If you have a story to share, we would love to hear from you.
We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.
By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.
Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.
Please complete the form below to share your story.
Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.
Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.
You do not have to face this alone. Support is here when you are ready.
The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.