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.
Christina, Patient
PURSUING A PARAGANGLIOMA Looking back now, all the pieces fit together. However, at the time it was entirely a different story. Initially, I noticed a distinct whooshing sound in my left ear. But I...
Donna, Patient
Name: Donna Age: 56 Neuroendocrine Cancer site(s): Primary = bowel and Secondary = liver Donna's Story: I'm a mum of 2 grown up children who I'm incredibly proud of. I work in the catering industry...
Janet, Patient
My name is Janet, I am 66 years young and have been diagnosed with NET’s in my bowel, liver and pancreas, after lots of tests and scans in 2020, I finally got diagnosed October 2020 and started on...
The Sweeping Tide of Family Emotions, by Lesley Porch
I am a Wife, a Mum, a Grandmother, a Sister, an Aunt and of course, a Friend. How hard was it for me to hear that the people I loved most were at risk of one day seeing me gravely ill and no longer...
Jane, Patient
LIKE BEING HIT BY A BASEBALL BAT I was so shocked when I was diagnosed with a Neuroendocrine Tumour at Stoke Hospital in June 2020. I called it a ‘baseball bat’ moment. One of those life changing...
You are still you, by Kath Lewis
Being diagnosed with neuroendocrine cancer tips life upside down (as will any type of cancer diagnosis) .It can take a long time to come to terms with, and not only is it a confusing and complex...
A Gentle Giant’s Approach by Ray Neville (6ft 4!)
I found the NETS patient Facebook forum so helpful since my diagnosis in June 2019. Everyone has a different NETS story but we all have the same niggles and anxieties. Culturally we are not...
Top Tips by Rodney Vowler
WHEN THE DUST began to settle a little after my Neuroendocrine Cancer diagnosis, I began to look around for additional information, particularly help with handling my emotions and feelings around a...
Being listened to by Bethann Siviter
Emergency Hospitalisation in October 2020, I had a skin infection and a moderately high temp, and felt very unwell, so the GP sent me to the local Casualty. The doctor in A&E examined the...
Living with Lanreotide by Kate Quirk
Lanreotide and I have been living-in-sin for three years now. Before that, I spent a year with Sandostatin but we fell out when he messed with my blood sugar levels. Lanreotide and I have a love /...
Olivia Williams, Patient
It was June 2018, I was in LA filming season 2 of the TV show Counterpart, pretending to be in need of life-saving surgery, pretending to have something very important to say, and not being able to...
Tony Attwood, Patient
My name is Tony Attwood. I was diagnosed with Neuroendocrine cancer following abdominal surgery in January 2000. In those days it was called carcinoid cancer. After being under the consultant...