Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy
OPINION:One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question.  It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease.Going forward I'm mostly intending to use the term Neuroendocrine Tumours (NETs) as that is where the problem lies.NANETS Guidance talks about the '...heterogeneous clinical…
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Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday.   UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type.  Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world.  Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…
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