If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”.  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.

This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis.  I very much suspect this challenge is the same for many types of primary cancers located in a single organ, let alone a type of cancer that can potentially appear as a primary at cellular level in almost every organ or part of the human body.   

With NETs, the location of the primary(….ies) along with the stage/grade and differentiation (at Grade 3) can make enormous differences in how that patient is treated and also in prognostics.  Add in syndromes and hereditary issues and you have a really difficult jigsaw.  Because of this complexity, too many people make blanket statements about Neuroendocrine Cancer which are misleading and this is not helped by a lack of context in patient advocate foundation’s awareness campaigns/websites and a lack of robust moderation in patient groups, over a period of years in some of them.

In my own group. I see the above problems daily (on some days hourly) and I also see patients and their loved ones asking very detailed questions expecting a very detailed answer which will stand up in court. The average group member will not know how to answer this type of question, often some of the ‘blanket statements’ I mentioned above are made and need careful moderation if too outlandish.

There are certain questions that are almost impossible to answer, perhaps even by a NET specialist.  Often members of my group (including myself) will often advise the person to ask their own specialist. This is not passing the buck or falling back on the group disclaimer. This is very often the best answer. 

Sometimes, there are no perfect answers about an imperfect cancer. It follows that pragmatism has a part to play at times. I believe this is something new patients and their supporters should learn early on.