Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010.  But it should be further forward, much further forward.  In some areas, we appear to be going backwards.

It’s not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message.  I respectfully suggest they stop it as I believe they are doing patients and NET awareness a disservice.  

A recent ASCO publication suggested the perceived rarity of NETs is holding back clinical research and in the same paragraph, also stated that NETs are uncommon but definitely not rare).

It’s no secret that I have been fairly ‘pushy’ for some years on this subject, and I will continue to push and cajole until I exhale the last breath in my body.  Patients and their loved ones deserve better.  I wrote in some detail 3 reasons why our awareness is impaired.  Click here to read that blog.  Some of you may be shocked by what I said, but I won’t be unsaying it anytime soon. 

But it’s not just the perceived rarity holding us back, it’s the infatuation with the term ‘carcinoid‘ which is also ‘two steps forward, one step back’.  The unnecessary use of this antiquated misnomer keeps us in the 20th century. 

And finally, the zebra cult.  For god’s sake, our awareness is for Neuroendocrine Cancer, not a football team, not a festival, not a party. It wouldn’t be so bad if that theme actually worked – it doesn’t, and many people have contacted me saying they also feel dehumanised and let down.   

We need a new paradigm.