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January 2026 | Newsletter No.13 | #ncukintheloop
THE CANCER STILL MISSING ON WORLD CANCER DAY
On World Cancer Day, many cancers are rightly in the spotlight, yet neuroendocrine cancer often goes unmentioned. That invisibility is why we have chosen this day to launch our new report, The Invisible Cancer: How delays, misdiagnosis and the unequal treatment of neuroendocrine cancer in the UK is costing lives. Our report highlights the real impact of low awareness and late diagnosis, and why change is urgently needed.
We’re proud to be launching it on 4 February and would be grateful for your support in helping us raise awareness. We’ll be sharing ready-to-use social media messages and a link to the report on the day, so please help us make neuroendocrine cancer visible.
PATIENT STORY
A Dietitian Transformed my NET Journey, by Karen
Neuroendocrine Cancer Site: Small Bowel
At one of my Consultant appointments, I asked if I could see a Dietitian – and it was remarkably easy to get time with her. What a revelation!
It was so refreshing and helpful.
HELP SHAPE THE FUTURE OF NEUROENDOCRINE CANCER RESEARCH
Have your say on the most important unanswered questions in neuroendocrine cancer care. Our national James Lind Alliance research priorities survey closes in two weeks.
CLINICAL TRIAL OPPORTUNITY FOR PEOPLE WITH INSULINOMAS
People living with insulinomas or tumour-related hypoglycaemia may be eligible for a new Phase 3 clinical trial. Learn more about the upLIFT study and how to take part.
You can find more information below
CANCER PATIENTS ARE BEING LET DOWN ON MENTAL HEALTH - WES STREETING MUST TAKE ACTION
We are delighted to continue supporting the Daily Express Cancer Care campaign, highlighting the vital importance of mental health support for people affected by cancer.
Lisa Walker, CEO, said: “For people with neuroendocrine cancer, the psychological burden of a less common and often misunderstood cancer can be profound. That is why NCUK is proud to back this campaign, calling for mental health care to be recognised as an essential part of cancer treatment, not an optional extra.”
Being part of this national campaign helps raise awareness of the emotional challenges patients face alongside their diagnosis and we are grateful for our partnership with the Daily Express.
LOOP TURNS ONE! TELL US WHAT YOU THINK
We’d love to hear your thoughts on the newsletter.
Please take a moment to complete our short questionnaire so we can continue to improve.
Thank you for your time and support.
CAKES FOR A CAUSE IS COMING!
Cakes for a Cause is a fundraising event where you can come together with friends, family, colleagues and your local community to raise critical funds to support those affected by neuroendocrine cancer.
Cakes for a Cause runs throughout the month of March. How and where you enjoy your cake is up to you! It could be a cosy coffee morning, an elegant afternoon tea, or simply enjoying a sweet treat in your home, office, school or park. Now is the time to start planning!
REMEMBERING PAUL HUNTER
This year marks 20 years since Paul Hunter, one of snooker’s most talented and charismatic players, tragically died at the age of just 27 from Neuroendocrine Carcinoma (NEC). A three-time Masters champion, Paul was admired not only for his extraordinary skill on the table, but also for his determination, sportsmanship and courage. So much so that the Masters trophy he was so well known for was named after him after his passing.
Paul continued to compete at the highest level while undergoing treatment, helping to raise awareness of neuroendocrine cancer at a time when little was widely known about the disease.
We are grateful to remember Paul Hunter for his support of Neuroendocrine Cancer UK, and whose fundraising helped create our first website and laid important foundations for the charity. His legacy lives on through his achievements, the respect he earned across the sporting world, and the awareness his story continues to bring to neuroendocrine cancers toda
PATIENT SUPPORT GROUPS
Every week we offer a variety of support groups designed to meet the diverse needs of our community. With sessions led by caring staff or community facilitators, you’ll find a safe space to share stories, gain insights, and grow stronger together. We are delighted to be able to continue our Patient & Family Support Meetings: with over 100 people a month taking part either in person or online.
All agreed and scheduled groups are listed on our Events Calendar : which is being currently populated with all agreed 2026 dates.
MANCHESTER PATIENT SUPPORT GROUP - GUEST SPEAKER
Dr Jamie Weaver drops in for coffee with Manchester Patient Support Group
Clinical Research Fellow, Dr Jamie Weaver came to talk to our Manchester group this month on the role of research in neuroendocrine cancer. He currently works with Professor Was Mansoor on the Lung NETs team at The Christie - and members of our group put Dr Weaver under the spotlight with some great discussions.
For those interested in seeking further information on Clinical Trials you can use: https://en.trialing.org
AMBASSADOR SPOTLIGHT
Meet Maxine. This month's Ambassador Profile, featuring our current Chair.
Like many patients, my diagnosis took years. I was finally diagnosed in 2015, which was followed by emergency major surgery at The Freeman Hospital in Newcastle upon Tyne, a UK NET Centre of Excellence. I spent a year recovering and trying to get back to my normal.
Except of course, life with neuroendocrine cancer is not normal, is it? There’s always that worry at the back of the mind. So, to compensate, I did what I always do. I got busy.,
Are you interested in being an ambassador? Find out more below:
FUNDRAISE FOR US!
We’re incredibly grateful for our amazing and supportive community. we want to extend our heartfelt thanks to everyone who supports Neuroendocrine Cancer UK. Your dedication, passion, and creativity make an incredible difference.
Did you know there are so many ways to get involved?
Visit our fundraising page below to explore the possibilities and start planning your next adventure today!
