@neuroendo-can-uk
Our purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment whilst stimulating neuroendocrine cancer research, increasing national awareness, and influencing improvements in outcomes.
A Day in the Life of a Nuclear Medicine Technologist delivering PRRT. Raquel from @TheChristieNHS shares how molecular radiotherapy, patient education, and precision care come together in treating neuroendocrine cancer.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
#PRRT #NuclearMedicine #NETs
Karen’s story highlights the impact of specialist dietetic support after small bowel neuroendocrine cancer surgery. NET-informed dietary advice helped her manage bloating, reflux, and steatorrhea, and significantly improved her quality of life. www.neuroendocrinecancer.org.uk/faces-of-ncu...
This morning, we joined CRUK at the House of Lords to discuss challenges in UK cancer research and how to overcome them.
www.surveymonkey.com/r/93885SM
After diagnosis, surgeries & treatment, Leanne didn’t give up. She adapted, persevered - and became a 5th Dan Black Belt in Taekwondo while living with neuroendocrine cancer.
An incredible story of strength, focus & hope.
📖 Read her story: www.neuroendocrinecancer.org.uk/faces-of-ncu...
📈 Neuroendocrine cancer incidence has risen 371% (1995–2018) - yet awareness remains low.
We must do more to recognise and diagnose it earlier.
🔗 Learn more about neuroendocrine cancer: www.neuroendocrinecancer.org.uk
Patients see their GP 11 times on average before being diagnosed with neuroendocrine cancer.
That’s 11 missed chances for answers.
Early recognition saves lives.
Learn more at: www.neuroendocrinecancer.org.uk
⏱️ It takes an average of 4.5 years from first symptom to a neuroendocrine cancer diagnosis.
That’s 4.5 years too long.
Early recognition and awareness can save lives.
Learn more 👉 www.neuroendocrinecancer.org.uk
After 20 years of exceptional leadership, Catherine Bouvier Ellis, the founding CEO of @neuroendo-can-uk.bsky.social , is stepping down.
THANK YOU to Cathy for her grand contribution.
INCA welcomes Lisa as CEO, wishing her inspiration and success!
Read more: shorturl.at/kVZea
#LetsTalkAboutNETs
Alan and his wife Kate shared their lived experience of #NeuroendocrineCancer at a Novartis training event - reminding everyone why the patient voice matters in research and care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
Told he had months to live, Matthew is now four years into his advanced lung #NeuroendocrineCancer diagnosis.
His story highlights resilience, the value of CNS support, and the power of multidisciplinary care.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
🌊 New #Podcast! Cathy speaks with Ruth, founder of Daily Dip 4 Dave, inspired by her husband Dave’s #NeuroendocrineCancer journey.
Hear about the challenge, her most memorable dips & how YOU can join the National Dip Day on Oct 11, 2025. 🎧 ow.ly/rWUM50X5uV6
“Sound familiar? I’d been trying to get a diagnosis for over 3 years before I finally found out I had pancreatic #NeuroendocrineCancer.”
Jon highlights delayed diagnosis, treatment with Lanreotide & Everolimus, & managing long-term side effects.
www.neuroendocrinecancer.org.uk/faces-of-ncu...
Carcinoid Syndrome (CS) is the most frequent hormonal syndrome in functioning NETs, marked by flushing & diarrhoea with elevated serotonin/5-HIAA.
Atypical CS (lung, stomach, duodenum, ovary) may cause patchy flush, wheeze, hypotension & more.
youtu.be/0IjLN7TkFhI
💬 “Emotional support is every bit as important as medical support.”
Cancer care must go beyond scans & treatment - we must also address the emotional toll. For people with neuroendocrine cancer, holistic support matters.
Neuroendocrine cancer symptoms are often vague or misdiagnosed. David, a GP, experienced abdominal pain from 2003 - finally diagnosed in 2016 with a midgut NET.
Watch his story & help raise symptom awareness among peers & patients.
🔗 youtu.be/dNSCcr3QTrg?...
Paul’s neuroendocrine cancer story: small bowel primary with liver mets, Lanreotide therapy, 2 major resections, and 77 days in hospital. His story highlights the impact of MDT-led care and patient resilience.
📖 Read: www.neuroendocrinecancer.org.uk/faces-of-ncu...
🎙️ New episode: Two Neuroendocrine Cancer UK professionals, Kate & Craig, share their unique perspectives as both staff and neuroendocrine cancer patients.
A powerful look at bridging lived experience with professional roles in cancer support.
🎧 Listen now: www.neuroendocrinecancer.org.uk/podcast/
⚠️ Outdated & misleading: “Carcinoid” fails to reflect the malignant potential of neuroendocrine neoplasms & should no longer be used.
Clear terminology = better understanding, earlier diagnosis, improved care.
www.neuroendocrinecancer.org.uk
Midge was diagnosed with a small bowel neuroendocrine tumour in 2023. With support from Queen Elizabeth Hospital Birmingham, he’s now self-injecting Lanreotide and managing well.
A candid, empowering patient perspective.
📖 Read more: www.neuroendocrinecancer.org.uk/faces-of-ncu...
In our latest webinar, Nikie Jervis shares expert insight on Pancreatic & Duodenal Neuroendocrine Neoplasms (NENs) incl. diagnosis, treatment & trials.
Watch now on YouTube: youtu.be/2oVTBm-2HQM?...
🌐 Learn more on our website: neuroendocrinecancer.org.uk
“When Deb was diagnosed with neuroendocrine cancer in 2005, I had no idea what we were facing. Finding The Christie changed everything. My advice? Advocate hard. Get to a Centre of Excellence.” — Dave. A 20-year caregiving journey: ow.ly/EA5O50W8AuA
New to Neuroendocrine Cancer UK? Don’t miss Season 1 of our 'Not Just NE Cancer' podcast - real stories from patients on symptoms before diagnosis + life after. Hear from Maxine, Simon, Michelle, Debra & Sally.
▶️ Listen now: www.neuroendocrinecancer.org.uk/podcast/
What is neuroendocrine cancer?
It can affect people of any age, occur almost anywhere in the body, and impacts ~6,000 people a year in the UK.
🎥 Watch our short explainer video + explore our patient handbook:
🔗 youtu.be/FhM5v4DyDGU
“If you think something is wrong with your body, keep telling the medics until someone listens to you.”
Donna’s neuroendocrine cancer was missed on initial scans, but persistence led to diagnosis, surgery, and ongoing care.
Read her story: ➡️ ow.ly/nS8E50W0JVn
Atypical lung neuroendocrine cancer often presents with no symptoms, as patient Melanie Lucas shares in the Daily Express.
Her diagnosis came via the NHS App. Her story highlights why earlier detection and mental health support are crucial.
📖 Read: www.express.co.uk/news/uk/2055...
Lung neuroendocrine cancers are frequently misdiagnosed due to symptom overlap with asthma, infection, or more common lung cancers.
We’re hosting a webinar with Prof Mansoor, The Christie, to discuss clinical signs, diagnostic approaches & support pathways.
🔗 register.enthuse.com/ps/event/Web...
Last week, our CEO Catherine attended the Educational Exchange Ipsen Talk connectING with HCPs and NET specialists across the UK.
Discussions focused on:
✔️ Patient empowerment
✔️ Shared decision-making
✔️ Practical tools for better NET care
🎥 New webinar recording now available: Bill Harris & Elena Vrana (The Christie) outline the purpose, phases & patient value of clinical trials in neuroendocrine cancer — incl. a case study & advocacy insights.
Watch here: youtu.be/DYBhHuFKhZM?...
👏A major step in raising awareness about neuroendocrine cancer and the unmet needs of patients was made by @neuroendo-can-uk.bsky.social through supporting the Daily Express Cancer Care campaign.
✅Read more about NCUK article: incalliance.org/ncuk-daily-e...
#LetsTalkAboutNETs
After a lung neuroendocrine cancer diagnosis, Hayley was later diagnosed with DIPNECH - a rare condition needing ongoing surveillance. She’s learning, adjusting, and turning her experience into action for others.
Read her story here: ow.ly/zPao50VT8FJ
