Orginal post – 25th Nov 2014.

The papers and social media seem to be full of awareness and early diagnosis articles this month.  This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov.  Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television. 

Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with Neuroendcrine Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they were experiencing were unusual for them.  Great advice and a reminder that the patient has a duty to help in their own diagnosis.   Ali also said to insist on seeing a doctor again if you felt something was still not right after the first visit.  Again, excellent advice on the basis it appears to have saved her life.   Click here for Ali’s interview

One other major story in 2014 which caught my attention was the statement from NICE (National Institute for Health and Care Excellence) that they intend to update their guideline document “Suspected cancer: recognition and management of suspected cancer in children, young people and adults“.  The statement followed news of research which indicated up to 10,000 people in England could be dying each year due to late diagnoses. This research cited the reasons why cancer diagnoses may be missed and these included the fact that over 200 different types of cancer exist, each with different symptoms, and that patients present at their GP with symptoms which are non-specific. I understand all these challanges but in 2024, we still don’t have an individual pathway for Neuroendocrine Neoplasms!

I found the NICE statement very interesting because in the 4 years I’ve been studying Neuroendocrine Cancer, I’ve never heard of these guidelines so thought I’d take a look.  No surprises that Neuroendocrine Cancer (or more specifically, Neuroendocrine Tumours or the ancient misnomer term Carcinoid) was not mentioned as a condition.  I searched the entire 405-page document using the search terms ‘Neuroendocrine’, ‘Carcinoid’ and ‘flushing’ and only turned up a single reference to ‘Neuroendocrine’ within the children’s cancer section under Neuroblastoma, something not mormally included within Neuroendocrine Cancer classification.

Like many cancer databases, these guidelines are constructed to look at cancer in terms of anatomy (cue issues for a cell based cancer such as NET) so I therefore, looked at the most common place for a NET (in UK) – the small intestine. I was happy to find a section on cancers of the small intestine which it defines as “a rare cancer of the duodenum, jejunum or ileum, with different histological subtypes. Most GPs will not diagnose a case during their career. The rarity of this cancer means there are no relevant studies of its clinical features. It may have symptoms similar to those of stomach or colorectal cancers. The main method of diagnosis is by biopsy, which is performed in secondary care.”  

Now, I cannot say that my own GP was thinking “small intestine cancer” when he referred me for further checks at secondary care but it is there I got a scan and bingo.  It also got me thinking that the target area for Neuroendocrine Cancer awareness campaigns in the UK might need to be focussed more on secondary rather than primary care? (not saying we shouldn’t be targeting GPs, but we need to focus on the care level more likely to actually look for and diagnose NETs). I have not changed my mind on that in 2024, some 10 years later. 

I then found a non-anatomy based section further on entitled “Recommendations for specific symptoms and signs” which then cross references to the potential cancers involved.   I was hoping to find something in there so I searched on the most common symptom of Carcinoid Syndrome (in most cases indicating an advanced neuroendocrine tumour) but there was no sign of the most common symptom of the most common type of Neuroendocrine Cancer (it’s actually flushing for those who were thinking diarrhea). 

It’s fantastic that UK’s NICE is updating its guidelines to provide the latest clinical and best practice advice to GPs.  I also read that they are encouraging GPs to refer more people to secondary care as another way of tackling the late diagnosis issue (particularly important for Neuroendocrine Cancer patients when you consider the NICE guidelines above).

It’s right that the more prevalent and more aggressive cancers be included as a priority in the NICE guidelines but Neuroendocrine Cancer is a notoriously prevalent and notoriously misdiagnosed condition and people do die of this disease if not found early enough. Additionally, many people have to live with a reduced quality of life due to the symptoms and side effects and this comes at great cost to healthcare providers.  Perhaps the incidence rate of Neuroendocrine Cancer is still not high enough to merit mention in the NICE guidelines? Or perhaps there is still a general ignorance of these types of cancers in the ‘medical establishment’?

Personally, I feel there could be a section specifically on Neuroendocrine Tumours as there are for other ‘systemic’ cancer types, perhaps with cross references to the various anatomy based sections in the document.  Consequently, I’ve emailed NICE asking if there is anything in the pipeline to include guidance on Neuroendocrine Cancers and I urge UK-based patients to do similar – their email is: nice@nice.org.uk  Spolier alert, 10 years after I sent the email, I’m still waiting on my reply!