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.
Melanie’s Lung Neuroendocrine Cancer Story
Name: Melanie Neuroendocrine Cancer Site: Lung NETS (also known as Typical Carcinoid Lung) Hospital: Diagnosed at St George’s University Hospital London* Date Diagnosed: March 2020 - The...
The Gift of Grandchildren: Margaret’s Story
Name: Margaret Watt Diagnosed: 2018. Primary Site: Small Bowel UK NET Centre of Excellence: Glasgow Beatson - Introduction My name is Margaret, and I am grandmother to four beautiful...
A Businessman’s Blog, By Alan
Primary Neuroendocrine Cancer Site: Pancreas NET Centre of Excellence: The Christie NHS Foundation Trust, Manchester - Living with Pancreatic Neuroendocrine Cancer I’m writing this in November 2024,...
Recognising a hypo, by Martin
Well, that was an interesting weekend. For the last 2 years I’ve been managing my blood glucose based on the Keep in Range protocol which means that I should take action, in theory, before my blood...
Pushing for a Pathway, by Chris
Name: Chris Neuroendocrine Cancer Site: Lung Hospital: Royal Free We’re delighted to welcome Chris from Wiltshire, who has just joined our Neuroendocrine Cancer UK Ambassador team. Chris was...
Taking Part in Research, by Leanne
Name: Leanne Neuroendocrine Cancer Site: Primary tumour in my rectum and metastases in my liver and thyroid. Hospital: Newcastle Freeman Hospital - Initial Diagnosis I was originally diagnosed in...
PRRT, Two Years on, by Tricia
Name: Tricia Hospital: The Royal Free - When my Professor told me that he would be recommending PRRT (Peptide Receptor Radionuclide Therapy) as the next step in my treatment plan, I went...
Long Time Living with Lanreotide, by Carolyn
Name: Carolyn Neuroendocrine Cancer Site: Bowel and secondary liver mets Hospital: Royal Free Hospital, and local. - Carolyn's Story: Lanreotide. Love it or hate it, it’s been my friend and part of...
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 on Cap/Tem, by Terrie
Name: Terrie Neuroendocrine Cancer Site: Small Bowel with Liver Metastases Hospital: The Christie Hospital, Manchester - My name is Terrie, I’m 77 years old and have been married to David for 55...
Lung Biopsy, by Davinya
Name: Davinya Neuroendocrine Cancer Site: Lung Hospital: The Christie Hospital, Manchester - Learning about my Lungs I thought some of you would like to hear my experience of a lung biopsy in May...
Neurodivergence and Neuroendocrine Cancer
Neurodivergence is wider than autism, but this piece specifically refers to autism. - Autism is a spectrum disorder, so it is variable: no one with autism experiences being autistic in the same way,...