Living with my rare cancer feels like waiting for things to get worse

It had spread in the local area of the bowel and regional lymph nodes. When I was diagnosed, they thought it had been there for four and a half years. It is crazy to think that at the time it was thought to be an early diagnosis. It took me about 15 months from the start of realising my symptoms and being turned away by doctors, to being diagnosed.

I have since had several surgeries to remove the tumours, but unfortunately, due to the advancement in my cancer, I am incurable. There are treatments available to me to manage my symptoms and pain. But the severe fatigue means I am unable to work any longer. As it’s a slow-growing cancer  - it’s only grade one - you are waiting all the time for the tumours to grow enough to access the next treatment. It’s devastating knowing I have cancer in my liver and spine, and we are not treating it, and my quality of life won't improve. Many other cancers have more treatment options. It’s really hard to have to live with this disease rather than eradicate it.

This World Cancer Day 2026, the charity Neuroendocrine Cancer UK (NCUK) has launched a report, ‘The invisible cancer’, calling for greater recognition and understanding of neuroendocrine cancer. This complex cancer is frequently misdiagnosed and missed. It can remain invisible for years - on average, it takes four and a half years to reach a diagnosis.

Steve Jobs died from a rare form of pancreatic neuroendocrine tumour (pNET), a slow-growing cancer distinct from typical pancreatic cancer, diagnosed in 2003 - it is often misquoted that he had pancreatic cancer - we need to change this misunderstood narrative. Every year, more than 6,000 people in England are diagnosed with neuroendocrine cancer - that’s one person every 90 minutes.

Although neuroendocrine cancer is an umbrella term for a group of individually rare cancers, it is less rare than official data suggests. Between 1995 and 2018 in England, the incidence of neuroendocrine cancers rose by 371 per cent, in the same period all-cancer incidence (excluding non-melanoma skin cancer) grew by 116 per cent.

Neuroendocrine cancer takes many different forms and can be difficult to recognise. Symptoms can vary and mimic other common conditions such as IBS, asthma, anxiety and menopause, making it harder for patients to be heard and for clinicians to reach a timely diagnosis. For many, this disease must be managed as a chronic, life-limiting condition, with symptoms that affect the quality of life long after diagnosis. Managing it is often a marathon, not a sprint. We hope that NCUK’s report goes some way toward making this invisible cancer more visible.

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Kerie Ivory, 52 and mum of 2, from Buckinghamshire has neuroendocrine cancer and receives support from Neuroendocrine Cancer UK (NCUK) as part of her ongoing care.

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