I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group – these are normally always directed at the entire group but often I’m tagged in, a giant hint that I’m expected to reply. I don’t mind too much but my answer is generally the same whichever scenario.

Where I’m not tagged, I’m still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but today, the group is far too big for any single person to contribute to every question.  Actually, very often I don’t have an answer to someone’s question beyond the task of moderating.  If I can help, I’m happy to answer as a member if I have something to say which I think might be helpful. Often I attach one of my blog posts – the main reason is because the question is complex and needs careful contextualising.  It’s that heterogeneity again!

Of course, the heterogenous nature of Neuroendocrine Neoplasms (NEN) – a term encompassing both Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC); means that any accuracy to an answer must have a detailed question. In many cases, the question does not provide sufficient detail to have any chance of being answered with any accuracy. People forget that other than the cell type of origin, every NEN of every grade, every stage, every type (where applicable) has different answers for most things including (but not limited to) prognosis, treatment, surveillance, guidelines.  For example, you simply cannot compare a (say) Stage 1 Appendiceal NET with a (say) Stage IV Pancreatic NEC.  And then their are accompanying syndromes!

Over the years I’ve learned to tailor my answers carefully, using words that are not too precise e.g. substituting ‘all’ with ‘most’. I also try to ensure that what I am saying is understood and cannot be misconstrued. Over the years, I have been contacted by two specialists asking why I told their patient something wrong, only to find that I had been misquoted! I have a disclaimer that covers me on all my sites but I do like to think my answers are as accurate as I can make them and often label statements as “my layman’s opinion” where it is an objective answer; or “my opinion” in cases of subjective answers.  I often see people get annoyed/angry/distressed to discover they cannot get an answer to their question. I guess this is part of the learning curve.

The fact that someone wants to run something their doctor/specialist has said to people in my group is in some ways a compliment to the experience of the group members who can be relied upon to help understand.

But I repeat something I’ve said before ….. not everything in cancer is black or white – much of it is a bit grey at times. Sometimes there is no definite answer to questions, sometimes it’s just not clear what might happen and things just need watching.  I know from many posts and comments in the group, that is very often the response of doctors and specialists.

“Not all answers are black and white” means that most situations in life are not simple with clear-cut right or wrong choices, but rather involve complexities and nuances, requiring a more nuanced understanding beyond just two extreme options.  Neuroendocrine Neoplasms are a heterogenous group of cancers.