Neuroendocrine Cancer (NET) is often called an "invisible" cancer, not because it's rare, but because its symptoms look like almost anything else.
Neuroendocrine tumours develop in neuroendocrine cells: cells found throughout the body, including the gut, pancreas, and lungs, that help control hormones and everyday bodily functions. When these cells become cancerous, the tumours that form can behave very differently from person to person: some grow slowly over many years, others more aggressively.
Because neuroendocrine cells exist all over the body, NET can start almost anywhere, which is part of why it's so easy to miss.
One person is diagnosed with Neuroendocrine Cancer every 90 minutes in the UK, around 6,000 people a year. More than 36,000 people are living with it today, and it's now more prevalent than stomach or pancreatic cancer.
NET most commonly starts in the lungs, the small bowel, the pancreas, the stomach, the appendix, or the large bowel and rectum. Wherever it starts, the underlying disease is fundamentally the same: cells that have stopped behaving normally.
NET symptoms are commonly mistaken for IBS, menopause, anxiety, or asthma. On average, it takes four and a half years to get a correct diagnosis, and the average patient visits their GP 11 times before they get one.
This is not a diagnostic checklist. No single symptom points to NET on its own, it's a pattern across more than one of these groups, especially if it doesn't resolve, that's worth raising with a GP. Early conversations are how earlier diagnosis happens.
Because NET can start almost anywhere and behaves so differently case to case, getting to a diagnosis usually means working through several different kinds of test, not just one.
Even when it starts in the same place, NET can grow at very different speeds. Doctors grade it using a test called Ki-67, which measures how many cells are actively dividing.
Getting the grade right isn't paperwork, it decides the treatment path someone is offered. Around 70% of cases are NET, the slower-growing form, where five-year survival is above 65%. The remaining 30% are NEC, faster-growing and more aggressive, where five-year survival falls below 10%.
Earlier diagnosis doesn't just change treatment. It gives people back time.Daily Dip 4 Dave
The more people, and GPs, who recognise the signs of NET, the sooner someone gets the right test.
Every year shaved off the average diagnosis time is a year of treatment options someone didn't have before. Treating a patient at an advanced stage costs the NHS an estimated £200,000 to £300,000 more than catching it early, so earlier diagnosis saves more than time.
Funding goes toward research into NET, because better understanding of the disease is what improves outcomes long term.
Earlier conversations lead to earlier answers.