Faces of NCUK
Be part of a like-minded community where you can share your own thoughts and feelings about Neuroendocrine Cancer.
Around 36,000 people are affected by Neuroendocrine Cancer in the UK, with over 5,000 people newly diagnosed each year. That is more than 13 people a day. For many the first time they will have heard about Neuroendocrine Cancer will be the day they receive their diagnosis.
Faces of NCUK is here for you to be part of a huge community of like minded people, and to share your own thoughts and feelings about Neuroendocrine Cancer. Whoever you are – a Neuroendocrine Cancer patient, a supporter, a friend, healthcare professional or a loved one – you have the power to take action and make your voice count.
By talking about your experiences, you can help us tell powerful stories that raise awareness and create a wider and deeper conversation about Neuroendocrine Cancer across the UK. People who’ve shared their story often find it a really positive experience and an opportunity to make a real difference for people living with Neuroendocrine Cancer, and their families.
Whether you are living with Neuroendocrine Cancer, or supporting a loved one who has been diagnosed, we’d love to hear from you.
How can you get involved?
All you need to do at this stage is click on the ‘Share your story’ button below and answer some questions, giving us as much information as you can and feel comfortable with. If we need more details, a member of the Stories team will get in touch to have a chat.
Thank you.
The stories here have been shared by Neuroendocrine Cancer patients, supporters, healthcare professionals and friends and colleagues of NCUK. We will constantly update this page, so please be sure to visit it again.
For some this has been the first time they have written about their experience and where they are now. Patients share their experiences of how they became ill, their treatment, and their road to recovery. Supporters and Healthcare professionals share their experiences. Please note that while most stories end on a positive note, others reveal insights into the very difficult roads that many Neuroendocrine Cancer patients face.
Please note that the stories and opinions posted in the Faces of NCUK are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
Supporter, Lucy has written a song for her Dad.
NETS and Everolimus, by Jon
Name: Jon Neuroendocrine Cancer Site: Pancreas Diagnosed: 2017 - Jon's Story When I was diagnosed with neuroendocrine tumours in April 2017, I had already been trying to get a diagnosis for more...
From Diagnosis to Surgery: Nick’s Experience with Pancreatic Neuroendocrine Cancer
Name: Nick Neuroendocrine Cancer Site: Pancreas Hospital: London Bridge Hospital (Private) Diagnosed: 2024 - Nick's Story Reflection After Surgery I’m writing this as a postscript nearly 10 weeks...
Illness Upon Illness, by Katie
Name: Katie Neuroendocrine Cancer Site: Pancreas Neuroendocrine Cancer Hospital: Hammersmith Hospital, part of Imperial NHS Foundation Trust London - Katie's Story I was a ballet dancer before I...
Living with Small Bowel Neuroendocrine Cancer and Liver Metastases, by Paul
Name: Paul Neuroendocrine Cancer Site: Small Bowel Primary, Liver Metastases Diagnosis: November 2022 Neuroendocrine Cancer Hospital: Queen Elizabeth, Birmingham - Paul's Story I suspect my route...
From Diagnosis to Doing My Own Jab: My Lanreotide Learning Curve, Midge’s Story
Name: Midge Neuroendocrine Cancer Primary Site: Small Bowel Diagnosed: December 2023 Neuroendocrine Cancer Specialist Centre: Queen Elizabeth Hospital, Birmingham - Midge's Story “Mr Jones, we...
Learning to Breathe Again: Laura’s Neuroendocrine Cancer Diagnosis at 28
Name: Laura Lonergan Neuroendocrine Cancer Site: Lung Neuroendocrine Cancer - Atypical Carcinoid (AC) Diagnosis Date: March 2024 Neuroendocrine Cancer Specialist Hospital: The Christie NHS...
Caring for a Loved One with Neuroendocrine Cancer, by Dave
Dave shares his powerful 20-year journey as a caregiver to his wife Deb, living with stage 4 neuroendocrine cancer. From misdiagnosis to expert care at The Christie, his story offers insight,...
When Symptoms Speak Louder Than Scans, by Donna
Name: Donna Neuroendocrine Cancer Site(s): Likely small bowel, and possibly the pancreas Diagnosed: December 2023 Neuroendocrine Cancer Hospital: Glasgow Royal Infirmary - Donna's Story: One of...
A Chance Discovery, by Hayley
Name: Hayley Neuroendocrine Cancer Site: Lung (Typical Carcinoid) Neuroendocrine Cancer Hospital: Oxford Churchill NET Centre of Excellence Diagnosis: April 2024 - Hayley's Story I was...
Coping with Sc-Anxiety by Kate Quirk
One way or another, a cancer diagnosis is life changing. And when you are living with cancer, there will always be periods of time when your mind runs away with you, especially down the road of...
My Life with Low Grade Tumours, by Angela
Name: Angela Neuroendocrine Cancer Site: Ileum Hospital: Southampton Diagnosed: 2019 - Angela's Story Living with neuroendocrine tumours (NETS) is such a double-edged sword, isn’t it? ...
My Mental Health and a Missed Diagnosis, by Melanie
Name: Melanie Neuroendocrine Cancer Site: Lung (Atypical Carcinoid) Diagnosis: October 2023 Neuroendocrine Cancer Specialist Centre: The Christie NHS Foundation Trust - Melanie's Story I think what...