Voice of Bucks resident used to raise awareness of often-invisible cancer

It comes as part of a film launched to mark World Neuroendocrine Cancer day (10/11).

A recording of Chesham resident Kerie Ivory's voice was broadcast from a bench as part of a film by charity Neuroendocrine Cancer UK, urging passersby to hear about her story with the cancer, helping to make the often-invisible cancer more visible.

Several patient's voice were broadcast from the bench in Market Square, with visitors were filmed sitting down on the bench, only to hear a voice coming from the apparently empty seat beside them. The footage (external) shows how they are initially confused, and then begin listening to the real story of Kerie and other patients living with neuroendocrine cancer.

Kerie, 52, was diagnosed in 2012 with small bowel neuroendocrine cancer (specifically, Neuroendocrine Tumour (NET)) and a primary tumour in the ileocecal valve, which has spread to her lymph nodes. She was forced to give up work in 2022 due to severe fatigue caused by the cancer.

She said: "Fifteen years ago I knew something was seriously wrong with me but I couldn't get my GP to take me seriously. I eventually got my diagnosis after 18 months and was shocked to find out this was considered an early diagnosis for neuroendocrine cancer! 

"It's simply not right that 15 years later people are still waiting too long, an average of five years, to get their neuroendocrine cancer diagnosis. I wanted to take part in this campaign to raise awareness of neuroendocrine cancer as the more people who know about it the more chance we have of diagnosing it earlier."

Alongside the film, Neuroendocrine Cancer UK has launched a new report "Seen Too Late" which highlights that on average people in the UK wait almost half a decade (4.7 years) to be diagnosed with neuroendocrine cancer.

It features the findings from the latest Support, Care and Needs (SCAN) survey - an international survey led by the International Neuroendocrine Cancer Alliance (INCA) - which found that more than half of people (51.9%1) in the UK were initially told they had something else. For one in three, this happened more than once and only one in four (24%) received the right diagnosis the first time.

Six years on from the previous survey, the charity say there has been little progress in diagnosis times as the average wait has increased by three months, further limiting people's treatment options.

They emphasise that delayed diagnosis remains one of the most significant challenges for this 'invisible cancer'. They say patients visit their GP an average of 11 times before receiving a neuroendocrine cancer diagnosis. Over half are diagnosed at an advanced stage (Stages 3 & 4), limiting treatment options and increasing the physical, emotional and clinical burden of the disease. 

Lisa Walker, CEO of Neuroendocrine Cancer UK, says: "We created this video to turn an unexpected conversation into a lasting impression of a cancer that too few people know about: neuroendocrine cancer. The more people hear the name, recognise it and talk about it, the harder it becomes to miss. But awareness is only part of the picture.

"Our Seen Too Late report shows that people with neuroendocrine cancer are still waiting far too long for their cancer to be recognised. They can face years of uncertainty, repeated misdiagnoses and fragmented care, often having to explain their symptoms and history time and again.

"People should not have to wait years for their cancer to be recognised. We need to see change: recognising neuroendocrine cancer sooner, ensuring timely access to specialist expertise and making sure care is better connected around the person."

The charity has a Symptoms Checklist which can be found here (external).