Neuroendocrine Neoplasms – very often there are no perfect answers

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.

It also represents a challenge for those to moderator large online patient groups. I have lost count of the times I have seen the wrong answer given to a worried patient because of one word HETEROGENEITY. There is a tendency in patient groups to assume everything is the same for every NET. e.g. everyone gets carcinoid syndrome, every symptom is caused by carcinoid syndrome. Everyone will metastasise, nothing is curable, everyone is terminal, everyone needs lifelong surveillance. And a hundred other misleading things. It is one of the reasons I invented my popular blog posts entitled …….

Don’t believe the hype – Neuroendocrine Cancer Myths debunked (click)

and

My NET is different than yours (click)

HETEROGENEITY. 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 end up making blanket statements about Neuroendocrine Cancer which are misleading and can frighten patients unnecessarily. 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 cases.

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.

The 50 Shades of Neuroendocrine Cancer

Heterogeneity is not just the different types and the different syndromes, it applies to many areas of this cancer.

Syndromes of Neuroendocrine Cancer

It’s not all about (so called) carcinoid syndrome

The Best Diet

The one that works for you

Crystal Balls

For those looking online for NETs prognostic data, I offer the following advice.

Sometimes there is no answer

Not everything in cancer is black or white – much of it is a bit grey at times. Sometimes there is no definite 100% tied down 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

Neuroendocrine Cancer — Click graphic to read more

Sometimes the grey answer is the best you’ll get, even from your doctor.

Summary

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.