ENETS Archives

Tag: ENETS

As a result, the European Neuroendocrine Tumor Society was founded in 2004 and the society members, currently numbering nearly 1,400, bring a variety of expertise from such fields as oncology, pathology, radiology, nuclear medicine, endocrinology, surgery and gastroenterology to ENETS.

ENETS goals include

improve the diagnosis and therapy of patients with neuroendocrine tumors in an international, interdisciplinary and scientific context

coordinate research at European hospitals and health research institutes, with emphasis on basic and clinical research for the diagnosis and treatment of NETs
further develop standards for the accreditations of ENETS Centers of Excellence
offer education and training for physicians and scientists at annual scientific and educational meetings
focus on writing and updating NET guidelines for all aspects of NET care including treatment and standards of care and subsequently publicising in medical and scientific journals
foster the exchange of forums for young investigators
support collaborative scientific projects of excellence
communicate with and inform patient advocates and patient self-help groups
cooperate with the pharmaceutical industry for the development of new diagnostic, therapeutic and information technologies
further endorse the ENETS Registry and Centers of Excellence throughout Europe
https://www.enets.org/

24 Nov 2024

By Ronny Allan

29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, ENETS, Hormones, Immunotherapy, Incurable cancer, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, PRRT, Quality of LIfe (QoL), SEER, Somatostatin analogues, Surgery

Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…

02 Jul 2024

By Ronny Allan

1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Afinitor, Cabometyx, Cabozantinib, CB-839, Chemotherapy, Cometriq, ENETS, Everolimus, Lung Cancer, Metastatic Neuroendocrine Cancer, mTOR inhibitor, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, PI3K inhibitor, Poorly differentiated, Prostate Cancer, Proteasome inhibitors, Renal cell carcinoma (RCC), Sunitinib (Sutent), Tyrosine kinase inhibitor (TKI), Vascular endothelial growth factor (VEGF), Well differentiated

Please note this drug was approved and is now covered in a new blog - click here Clinical Trial history retained below for reference purposes BREAKING NEWS - 6th August 2024 Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors. Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors – The FDA assigned a Prescription Drug User Fee Act target action date of April 3, 2025 – – Application is based on results from…

20 Apr 2024

By Ronny Allan

41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient AdvocacyAppendiceal NET, Benign tumour, Carcinoid, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, ENETS, Gastric NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Gastrointestinal NET (GI-NET), Hedinger syndrome, Karzinoide, Lung NETs, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pathology, Pheochromocytoma, Rectal NET, Serotonin, Siegfried Oberndorfer, Small intestine NET (SI NET), World Health Organisation (WHO)

There's a constant debate regarding the validity of the term 'Carcinoid'. I've posted about this a few times and as far as I know, the debate has been raging for some years. This post was originally generated in April 2015 (and hasn't changed that much!). EDIT MARCH 2024. There is now a consolidated Endocrine/Neuroendocrine Tumour classification system (Blue Book). Still in print but you can see a summary of changes by clicking here. This change should provide some leverage to Neuroendocrine committees particularly about what things should be called. EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms…

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…

28 Oct 2023

By Ronny Allan

2 Comments

European Neuroendocrine Tumour Society (ENETS) 2023 guidance paper for nonfunctioning pancreatic neuroendocrine tumours

Latest ENETS GuidelinesENETS, Non-functional tumour, Pancreatic NET (PanNET)

There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the majority of pancreatic…

05 Feb 2019

By Ronny Allan

1 Comment

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

The NET Effect Series, TreatmentAcid reflux, Antiacids, Axid (Nizatidine), Barrett's Esophagus, Carcinoid tumour, Chromogranin A (CgA), Cimetidine, Dexilent, Dexlansoprazole, ENETS, Esomeprazole magnesium, Famotidine, Gastric NET, Gastrin, Gastrinoma, Gastroesophageal reflux disease (GERD), H2 blockers, H2 receptor antagonist (H2RA), Hormones, Hypergastrinemia, Lansoprazole, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nexium, Nizatidine, Nutrition, Omeprazole, Omeprazole and sodium bicarbonate, Pancreastatin, Pantoloc control, Pantoprazole, Pepcid (Famotidine), Prevacid (Lansoprazole), Prilosec (Omeprazole), Proton pump inhibitors (PPI), Protonix (Pantoprazole), Quality of LIfe (QoL), Rabeprazole (Aciphex), Ranitidine (Zantac), Stomach ulcer, Tagamet, Vimovo, Zantac, Zollinger-Ellison Syndrome

What are Proton pump inhibitors (PPIs)? Proton pump inhibitors (PPIs) are among the most commonly used medications in the world. They reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid-related conditions such as: Esophageal, duodenal and stomach ulcers NSAID-associated ulcer Ulcers Gastroesophageal reflux disease (GERD) Zollinger-Ellison Syndrome…

01 Apr 2017

By Ronny Allan

1 Comment

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona. I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time. Some of them have been great supporters since the inception of my blog and community. March was a slower month in blogging terms due to…

01 Mar 2017

By Ronny Allan

9 Comments

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Surgery, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥ January's success…

13 Jun 2016

By Ronny Allan

4 Comments

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, TreatmentAdvanced neuroendocrine cancer, Brain tumour, Breast cancer, Colon cancer, Colorectal cancer, ENETS, Head and Neck Cancer, Intraoperative radiotherapy (IORT), Lung Cancer, NET Centre of Excellence, Pancreatic cancer, PRRT, Surgery

New treatments seem to be appearing every month and that is good news for patients. I have a personal connection to this one though. In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England. This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals). It is the first ever deployment of this type of treatment in UK and Chris and I were…