Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Scroll down to check out the doctors list just below Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source!  To the best of my knowledge, this the only attempt at a worldwide list of specialists.  Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE).…
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Genetics and Neuroendocrine Tumours

Genetics and Neuroendocrine Tumours

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…
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Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time.  Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…
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When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical MedicinePhysician Lead, GI Clinical ResearchDirector, National Clinical Trials NetworkDirector, Penn Neuroendocrine Tumor ProgramDivision of Hematology and OncologyUniversity of Pennsylvania, Abramson Cancer CenterPerelman Center for Advanced Medicine Philadelphia, PA The discussion is centred on…
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