Low Grade NETs Archives

27 Nov 2024

20 Comments

The Invisible NET Patient Population

AwarenessCancer registries, Carcinoid tumour, Epidemiology, High grade neuroendocrine neoplasm (NEN), Incidence, Intermediate grade NET, Low Grade NETs, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pheochromocytoma, Prevalence

First published August 2017 but updated several times UPDATED TO INCUDE PUBLISHED US FIGURES IN 2025 OPINION I found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you…

03 Jul 2024

By Ronny Allan

1 Comment

The 50 shades of Neuroendocrine Neoplasms

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Differentiation, Foregut, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Grade, High grade neuroendocrine neoplasm (NEN), Hindgut, Hormones, Low Grade NETs, Metastatic Neuroendocrine Cancer, Midgut, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Poorly differentiated, Serotonin, Small intestine NET (SI NET), Stage, Well differentiated

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of 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. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…

17 Jun 2024

By Ronny Allan

23 Comments

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Ga68 PET/CT, Incurable cancer, Lanreotide, Low Grade NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Palliative care, Palliative treatment, Prognosis, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Terminal cancer

When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife…

29 Mar 2024

By Ronny Allan

1 Comment

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentDiagnosis, Distant metastatis, Intermediate grade NET, Liver embolization, Low Grade NETs, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Octreotide, Octreotide scan, Small intestine NET (SI NET), Surgery

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…

16 Mar 2024

By Ronny Allan

20 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient AdvocacyAdenoma, Advanced neuroendocrine cancer, Benign tumour, Cancerous tumour, Carcinoid tumour, Carcinoma, High grade neuroendocrine tumour (NET), Low Grade NETs, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Poorly differentiated, Surgery, Well differentiated

Reviewed and Updated 14th March 2026 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…

11 Mar 2024

By Ronny Allan

25 Comments

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Patient AdvocacyBlue Book, Cancer grading, Cancer staging, Carcinoid tumour, Differentiation, ENETS, Grade, High grade neuroendocrine tumour (NET), Intermediate grade NET, Ki-67, Large cell neuroendocrine carcinoma (LCNEC), Low Grade NETs, MEN1 syndrome, Mitotic count, Mitotic rate, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pathology, Poorly differentiated, Proliferative rate, Small cell neuroendocrine carcinoma (SCNEC), Stage, Surgery, TNM staging system, Well differentiated

Updated 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published. You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types of Gastric NETs - Types IV and V, a genetic mutation and PPI related respectively. A larger update will be added when the publication is available online. The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…

Tag: Low Grade NETs