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Ronny Allan – Living with Neuroendocrine Cancer

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  • About
    • Join the Support Group
    • Recommendations
    • My Diagnosis and Treatment
      • My Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)
      • My Neuroendocrine Cancer Surgery – a patient experience (part 2)
      • My liver rescetion
      • My lymphadenectomy
    • Ronny’s Video Presentations
    • Health Union Patient Leader
    • Disclaimer
    • Award Winning Blog
  • A spotlight on NENs
    • A spotlight on NENs – Types
      • A spotlight on Small Intestine Neuroendocrine Tumours
      • A spotlight on Appendiceal Neuroendocrine Neoplasms
      • A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)
      • A spotlight on Rectal Neuroendocrine Neoplasms
      • A Spotlight on Lung Neuroendocrine Neoplasms
      • Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma
      • A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms
    • A spotlight on NENs – Syndromes
      • A Spotlight on Neuroendocrine Cancer Syndromes – Carcinoid Syndrome
    • A Spotlight on NENs – Testing
      • Tumour markers and Hormone Levels
      • A spotlight on Chromogranin A
      • A spotlight on 5-HIAA
      • The NETest® – a Chromogranin A replacement and more?
  • Epidemiology
    • Neuroendocrine tumors are uncommon but definitely not rare
    • Neuroendocrine Neoplasms – not as rare as you think
    • The Invisible NET Patient Population 
    • Genetics
      • Neuroendocrine Neoplasms (NEN) – genetic related syndromes
      • A spotlight on Multiple Endocrine Neoplasia (MEN)
  • NET Guidelines
  • Diagnosis and Surveillance
    • Neuroendocrine Neoplasms – Classification, Grade and Stage
    • A spotlight on Gastric Neuroendocrine Neoplasms
    • Where to find a NET Specialist worldwide
    • 10 questions to ask your doctor
    • Diagnosing the Undiagnosed
    • A needle in a haystack?
    • Marker Tests
    • Syndromes and Symptoms
      • I bet my flush beats yours?
      • Neuroendocrine Cancer – the diarrhea jigsaw
      • The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis
      • Hormones
      • Neuroendocrine Cancer: Clinical Esoterica
      • Gallium 68 PET Scans – Into the Unknown
      • Serotonin – the NET effect
      • Cancer-related fatigue (CRF) – Neuroendocrine Cancer
      • Imaging
        • Neuroendocrine Cancer – If you can see it, you can detect it!
        • Ga68 PET Scan – a game changer?
        • Neuroendocrine Tumours – now you see them, now you don’t!
        • Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer
        • Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results
  • Treatments
    • Treatment – a summary for patients
    • Surgery
      • Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
      • Surgery for NETs – Chop Chop
      • Surgery is risky but so is driving a car
      • Small intestine, large surgery
      • Pancreatic Neuroendocrine Tumours – surgical decisions
      • Neuroendocrine Cancer – my liver surgery
    • Liver Embolization (bland, chemo, radio)
    • Somatostatin Receptors
    • PRRT
      • Peptide Receptor Radionuclide Therapy (PRRT)
      • Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future
    • Somatostatin Analogues
      • Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
      • Lanreotide – it’s calling the shots!
      • At home with Lanreotide (….and Octreotide)
      • Somatostatin Analogues and delivery methods in the pipeline
    • Everolimus (Afinitor)
    • Sunitinib (Sutent)
    • Chemotherapy
    • Telotristat Ethyl (XERMELO®)
  • Diet and Nutrition
    • Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.
    • Article 1 – Vitamin and Mineral Challenges
    • Article 2 – Gastrointestinal Malabsorption
    • Article 3 – Gut Health
    • Article 4 – Food for Thought?
    • Article 5 – Pancreatic Enzyme Replacement Therapy (PERT)
    • Article 6 – featuring the 2020 video series by Tara Whyand RD
    • The trouble with the NET (Part 5) – Cancer Diet Myths
    • Lactose intolerance – the NET Effect
    • Fructose intolerance – the NET Effect
    • Low FODMAPs – The NET Effect
    • Low and High Residue Foods
  • Clinical Trials and Research
  • Awareness Posts
    • The Trouble with the NET Series
    • The NET Effect Series
    • All Awareness Posts
  • Glossary of Terms (A to Z)
  • Home Page
  • About
    • Join the Support Group
    • Recommendations
    • My Diagnosis and Treatment
      • My Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)
      • My Neuroendocrine Cancer Surgery – a patient experience (part 2)
      • My liver rescetion
      • My lymphadenectomy
    • Ronny’s Video Presentations
    • Health Union Patient Leader
    • Disclaimer
    • Award Winning Blog
  • A spotlight on NENs
    • A spotlight on NENs – Types
      • A spotlight on Small Intestine Neuroendocrine Tumours
      • A spotlight on Appendiceal Neuroendocrine Neoplasms
      • A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)
      • A spotlight on Rectal Neuroendocrine Neoplasms
      • A Spotlight on Lung Neuroendocrine Neoplasms
      • Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma
      • A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms
    • A spotlight on NENs – Syndromes
      • A Spotlight on Neuroendocrine Cancer Syndromes – Carcinoid Syndrome
    • A Spotlight on NENs – Testing
      • Tumour markers and Hormone Levels
      • A spotlight on Chromogranin A
      • A spotlight on 5-HIAA
      • The NETest® – a Chromogranin A replacement and more?
  • Epidemiology
    • Neuroendocrine tumors are uncommon but definitely not rare
    • Neuroendocrine Neoplasms – not as rare as you think
    • The Invisible NET Patient Population 
    • Genetics
      • Neuroendocrine Neoplasms (NEN) – genetic related syndromes
      • A spotlight on Multiple Endocrine Neoplasia (MEN)
  • NET Guidelines
  • Diagnosis and Surveillance
    • Neuroendocrine Neoplasms – Classification, Grade and Stage
    • A spotlight on Gastric Neuroendocrine Neoplasms
    • Where to find a NET Specialist worldwide
    • 10 questions to ask your doctor
    • Diagnosing the Undiagnosed
    • A needle in a haystack?
    • Marker Tests
    • Syndromes and Symptoms
      • I bet my flush beats yours?
      • Neuroendocrine Cancer – the diarrhea jigsaw
      • The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis
      • Hormones
      • Neuroendocrine Cancer: Clinical Esoterica
      • Gallium 68 PET Scans – Into the Unknown
      • Serotonin – the NET effect
      • Cancer-related fatigue (CRF) – Neuroendocrine Cancer
      • Imaging
        • Neuroendocrine Cancer – If you can see it, you can detect it!
        • Ga68 PET Scan – a game changer?
        • Neuroendocrine Tumours – now you see them, now you don’t!
        • Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer
        • Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results
  • Treatments
    • Treatment – a summary for patients
    • Surgery
      • Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
      • Surgery for NETs – Chop Chop
      • Surgery is risky but so is driving a car
      • Small intestine, large surgery
      • Pancreatic Neuroendocrine Tumours – surgical decisions
      • Neuroendocrine Cancer – my liver surgery
    • Liver Embolization (bland, chemo, radio)
    • Somatostatin Receptors
    • PRRT
      • Peptide Receptor Radionuclide Therapy (PRRT)
      • Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future
    • Somatostatin Analogues
      • Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
      • Lanreotide – it’s calling the shots!
      • At home with Lanreotide (….and Octreotide)
      • Somatostatin Analogues and delivery methods in the pipeline
    • Everolimus (Afinitor)
    • Sunitinib (Sutent)
    • Chemotherapy
    • Telotristat Ethyl (XERMELO®)
  • Diet and Nutrition
    • Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.
    • Article 1 – Vitamin and Mineral Challenges
    • Article 2 – Gastrointestinal Malabsorption
    • Article 3 – Gut Health
    • Article 4 – Food for Thought?
    • Article 5 – Pancreatic Enzyme Replacement Therapy (PERT)
    • Article 6 – featuring the 2020 video series by Tara Whyand RD
    • The trouble with the NET (Part 5) – Cancer Diet Myths
    • Lactose intolerance – the NET Effect
    • Fructose intolerance – the NET Effect
    • Low FODMAPs – The NET Effect
    • Low and High Residue Foods
  • Clinical Trials and Research
  • Awareness Posts
    • The Trouble with the NET Series
    • The NET Effect Series
    • All Awareness Posts
  • Glossary of Terms (A to Z)

Tag: GHRHoma

Growth hormone–releasing hormone (GHRH) tumour.  Normally related to the Pituitary Gland and Acromegaly but may also appear eptopically in other areas includng the pancreas.  Can be related to MEN1.

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European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes
Latest ENETS GuidelinesACTHoma, Calcitoninoma, Carcinoid syndrome, Functional tumour, Gastrinoma, GHRHoma, Glucagonoma, Insulinoma, Pancreatic NET (PanNET), PPoma, PTHrPoma, Somatostatinoma, VIPoma

European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes

By Ronny Allan Oct 29, 2023 2 Comments

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Find a Trial
  • The next generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac
  • Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
  • Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness
  • Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan
  • Ronny Allan – just a wee Scottish guy with a computer
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  • A spotlight on NENs – Syndromes
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