Neuroendocrine Cancer Stories & Experiences
Faces of NCUK & Voices of NCUK
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.
In 2020 we launched Faces of NCUK & Voices of NCUK. These campaigns provide a platform for those who wish to share their journey and experiences and are a source of support for those who have just started their journey.
Below you can browse various blogs and journals. View photos and read, or watch stories shared by Neuroendocrine Cancer patients, supporters, friends, healthcare professionals and loved ones.
Please note that the stories and opinions posted in the Faces of NCUK and Voices of NCUK are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
Faces of NCUK
Patients share their experiences of how they became ill, their treatment, and their road to recovery.
Supporters and Healthcare professionals also share their experiences of supporting someone with Neuroendocrine Cancer.
Please note that some stories end on a positive note, but some paint a picture of the difficult road that many Neuroendocrine Cancer patients face.
Voices of NCUK
Browse various blogs and social pages – read journals, view photos, listen to podcasts or watch videos of those sharing their personal journey, experience and knowledge.
Find out how advocates are raising vital funds but most importantly raising awareness of Neuroendocrine Cancer – and all to support you… and to make a difference.
Podcasts
Here you can find and listen to the NCUK’s podcasts for free.
Our podcasts fall under three categories:
- Insights to life with Neuroendocrine Cancer
- Keeping up to de with the experts
- Discussion & insight with the expert
FACES OF NCUK
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.
Supporter, Lucy has written a song for her Dad.
Christina, Nurse Clinician
My name is Christina Nuttall and I'm one of the Nurse Clinicians at The Christie NHS Foundation Trust, Manchester. I have worked as a nurse clinician covering upper gastrointestinal (UGI),...
Rajpreet, Supporter
Name: Ranjpreet Supporter: Father has oesophageal Neuroendocrine Cancer. Ranjpreet's Story: 💬 My father has been diagnosed with NET of the oesophagus which is rare and I’ve not heard or read much...
Natalie, Neuroendocrine Cancer Clinical Nurse Specialist
I LOVE MY JOB The impact of a cancer diagnosis is life changing, not only for the patient but also the people around them. I have had firsthand experience of losing a close family member to cancer,...
Kevin, Patient
Name: Kevin Age: 53 Neuroendocrine Cancer Site: Small Intestine / Liver Kevin's Story: I was diagnosed in early 2021 with primary NET in my small intestine and secondary in my liver after initially...
Maxine, Patient
Name: Maxine Neuroendocrine Cancer Site: Small Bowel NOT THE LIFE WE PLANNED …. It was October 2015, and as I lay on the CT scanner bed, suddenly the inconsequential, friendly chatter in the room...
Allison, Patient
Name: Allison Age: 41 Neuroendocrine Cancer Site: Primary - Pancreas with Lymph Node spread Allison's Story: In 2018, at the age of 38, I was diagnosed with a grade 1 pancreatic neuroendocrine...
How can you get involved?
Faces of NCUK is a space for you 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.
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.
VOICES OF NCUK
Here you can browse various blogs and social pages – read journals, view photos or watch stories of those sharing their personal journey, experience and knowledge. Find out more on how advocates are raising vital funds, but more importantly raising awareness of Neuroendocrine Cancer – to support their fellow members of the Neuroendocrine Cancer Community, including you and your loved ones … and to make a real difference.
We are so grateful for our community – despite your own challenges, you are all so passionate and inspirational. Thank you for giving us an insight into your life and providing invaluable support.
Life as a carer – The rollercoaster it takes you on
I have never liked rollercoasters, even pushing my children on the park roundabout was enough for me….. Many years later, I now in fact find myself on my own rollercoaster while accompanying my...
I’m Fine … no, really ….”
Reproduced with thanks to Alan, friend of award-winning advocate for the cancer community, Chris Lewis. How are you?” everyone asks, “I’m fine” “You are looking well” everyone says, “Yes, I’m fine”...
“Finding a new role in life after a cancer diagnosis”
I was a “typical boy” throughout my own education. I did as little as possible and hoped for the best. I had no idea what I wanted to do with my life and very little in terms of education,...
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...
Early Retirement Due to Ill Health, by Simon
I was diagnosed with two PNETs (Pancreatic NETs) at the age of 35, one at either end of my pancreas. I had been off work sick for about 4 months beforehand. I received my first pension payment in...
Neuroendocrine Cancer and Sight Issues
Name: Mel Age: 74 Neuroendocrine Cancer Site: Primary in bowel, secondary liver initially Mel's Story My name is Mel and I have neuroendocrine cancer which was diagnosed in 2014, along with prostate...
BLOGS
Peter’s vlog
As a hobby, I had been making short videos for my YouTube channel sharing my love of health, fitness, and the outdoors. However, I was diagnosed with a primary neuroendocrine tumour of my small...
Fighting Cancer with George
Aged 24, diagnosed with Neuroendocrine Cancer of the Pancreas. You can follow George's journey and check out the amazing support that he has received from many celebrities and sporting legends on...
A site by Ronny Allan – Living with Neuroendocrine Cancer
Welcome to the website of Ronny Allan who was diagnosed with incurable Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial...
A Road Less Travelled – Living with Neuroendocrine Cancer by Kath Lewis
At the age of 53 on the 20th June 2015, I was told that I had a Neuroendocrine tumour, which had metastasised to my liver. As you can imagine it came as a bit of a shock. I am in now in my late...
Beauty & the Big C by Laura Anderson
Irish Gilmore Girl. Aged 33. Neuroendocrine Cancer patient. Incurable but treatable? Trying to take control and learn about healing my body for better quality of life and survive. Click here to...