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Ronny Allan
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 differentation (at Grade 3) can make enourmous 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 pragmastim 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
Heterogeniity 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.
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.
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A cup of tea
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