It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery – the first of what was to be several visits to an operating theatre. The last thing I remembered before going ‘under’ was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. I can still remember the feeling today; it was like I was pinned to the bed and I was completely vulnerable and helpless. However, what I remember most was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.
The build-up to this day began on 26 July 2010 when I was given the news that I had metastatic Neuroendocrine Tumours and that the prognosis without any treatment wasn’t too good making the decision to have treatment a lot easier. I told my Oncologist to ‘crack on’ with whatever treatment would be required.
However, it wasn’t that easy and as I was yet to find out, Neuroendocrine Cancer isn’t a simple disease. I first had to undergo a plethora of other tests including specialist scans, blood, and urine tests. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a something called a ‘somatostatin analogue’. The scan also confirmed I had more tumours than initially thought. This was key to working out my treatment plan as I now had a grade, stage and I had the right tumour ‘receptors’ to assist along the way.
When I initially presented in May 2010, I hadn’t realised for some months that I was showing symptoms of one of the Neuroendocrine Tumour syndromes (in my case carcinoid syndrome‘. This was mainly facial flushing but thinking back, there was some diarrhea albeit infrequent. The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming both the diagnosis of tumour bulk and tumour activity, respectively. The tumour activity (or function) is one thing which makes NETs different from most cancers and is caused by excessive secretion of specific hormones applicable to the primary location of the tumour. Thus, why I had to be established on a ‘somatostatin analogue’ which is designed to inhibit the excessive secretion. I self-injected Octreotide daily for 2 months until the flushing was under control. When certain Neuroendocrine Tumours cause carcinoid syndrome, there is a risk of a phenomenon known as ‘Carcinoid Crisis‘. This is the immediate onset of debilitating and life-threatening symptoms that can be triggered by several events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 to have an ‘Octreotide soak’ (Octreotide on a drip) prior to the surgery on 9th November 2010.
As is normal for such procedures, I had the risks explained to me. There seemed to be a lot of risks on the list and my surgeon, Mr Neil Pearce, carefully explained each one. Death was on the list, but I was happy to hear he had a 100% record on his ‘table’. Trust is an extremely important word when you’re in this situation.
As a snub to cancer, I refused the offer of a wheelchair and chose to walk to the operating theatre at around 2.30pm. So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown (carefully fastened at the rear!), I wandered down to the operating theatre with my escorting nurse. The anaesthetist injected the anaesthesia and commenced his countdown. It worked!
The 9-hour operation was designed to debulk what was described as “extensive intra-abdominal neuroendocrine disease”. The operation comprised the removal of 3 feet of small intestine at the terminal ileum plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction. With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava below the level of the superior mesenteric artery. Phew! Thank goodness I was asleep! Read the remainder of my therapy story here.
When I woke up just after midnight on 10th Nov 2010, what I remember most was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.
One day per year doesn’t cut it for me, so on the basis you can never have enough awareness windows, for me EVERY DAY IS WORLD NET DAY and via my own social media channels, I’m making sure everyone knows!
Thanks for reading.
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Treatment for Neuroendocrine Cancer – a summary for patients
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A
- Abdomen
- Ablation
- Ac-225
- ACE inhibitor
- Achlorhydria
- Acid reflux
- Acromegaly
- Actin
- Acute
- Addison’s disease
- Adenocarcinoma
- Adenoma
- Adhesions
- Adjunctive therapy
- Adjuvant surgery
- Adjuvant therapy
- Adrenal cortex
- Adrenal glands
- Adrenal insufficiency
- Adrenal medulla
- Adrenaline
- Adrenocortical Carcinoma (ACC)
- Adrenocorticotropic Hormone (ACTH)
- Advanced neuroendocrine cancer
- AdVince
- Afinitor
- Aggressive
- Albumin
- Alcohol
- Alcohol flushing reaction
- ALDH2
- Aldosterone
- Allergies
- Alopecia
- Alternative medicine
- Alternative therapies
- American Society of Clinical Oncology (ASCO)
- Amines
- Amino acids
- Amoxicillin
- Ampulla
- Ampulla of Vater
- Amylase
- Analogue (US Analog)
- Anaphylactic shock
- Anaplastic
- Anastomosis
- Androgrens
- Anemia
- Anesthesia
- Angiogenesis
- Angiogenesis inhibitor
- Angiogram
- Angioma
- Anorexia
- Anti-angiogenic therapy
- Antiacids
- Antibiotics
- Antibody
- Anticoagulant
- Antidepressant
- Antiemetic agent
- Antigen
- Antihistamines
- Antineoplastic
- Antineoplastic therapy
- Antioxident
- Anxiety
- Aorta
- Apoptosis
- Appendectomy
- Appendiceal NET
- Appendix
- Apudoma
- Aretha Franklin
- Arrhymia
- Arterial embolization
- Ascending colon
- Ascites
- Aspiration
- Assay
- Asthma
- Ataxia
- Atezolizumab (Tecentriq)
- Atopic dermatitis
- Atrophic gastritis
- ATRX
- Atypical
- Atypical carcinoid tumour
- Autosomal dominant
- Avelumab
- Avistan
- Axid (Nizatidine)
- Axilla
- Axillary nodes
- AZEDRA
B
- B12
- B3
- BAM
- Barium enema
- Barium swallow
- Barrett’s Esophagus
- Bavencio
- Benign
- Benign NET
- Benign tumour
- Beta emitter
- Bevacizumab
- Bias
- Biased agonist
- Bile
- Bile acid diarrhea
- Bile acid malabsorption
- Bile acid sequestrant
- Bile acids
- Bile duct
- Bile salt
- Biliary
- Biliary tract cancer
- Bilirubin
- Bioavailable
- Biofeedback
- Biological therapy
- Biomarker
- Biopsy
- Bland liver embolization
- Blinded study
- Blood area nitrogen (BUN)
- Blood brain barrier (BBB)
- Blood cells
- Blood clot
- Blood count
- Blood glucose
- Blood test
- Blood thinner
- Blue Book
- Blushing
- Bolus
- Bone marrow
- Bone marrow biopsy and aspiration
- Bone marrow suppression
- Bone metastases
- Bone scan
- Bowel
- Bowel cancer
- Bowel obstruction
- Bowel surgery
- Bradykinin
- Brain serotonin
- Brain tumour
- Breast cancer
- Breast NEN
- Broken capillaries
- Bronchi
- Bronchial
- Bronchial NET
- Bronchiole
- Bronchitis
- Bronchopulmonary Neuroendocrine Neoplasms (BP NEN)
- Bronchoscopy
- Bronchus
- BUN
- Butt dart
- Bypass
C
- C cell
- C-peptide
- CA 19-9
- CA-125
- CA4P
- Cabometyx
- Cabozantinib
- Cachexia
- Calcitonin
- Calcitonin gene-related peptide (CGRP)
- Calcium
- Calorie
- CAM
- Camera pill
- Cancer
- Cancer anger
- Cancer causes
- Cancer grading
- Cancer of unknown primary (CUP)
- Cancer registries
- Cancer research
- Cancer staging
- Cancer surveillance
- Cancer survivor
- Cancerous tumour
- Cancerversary
- Candidiasis
- Capecitabine
- Capecitabine (Xeloda)
- CAPecitabine TEMozolomide (CAPTEM).
- Capsule endoscopy
- CAPTEM
- Carbocaine
- Carbohydrate
- Carboplatin
- Carcinogen
- Carcinoid
- Carcinoid crisis
- Carcinoid heart disease
- Carcinoid rage
- Carcinoid syndrome
- Carcinoid tumour
- Carcinoma
- Cardiopulmonary hemodynamic instability
- Carney complex
- Catecholamines
- CB-839
- CDKN1B
- Cerebellum
- Chemo bath
- Chemotherapy
- Chinese dumplings
- Cholangiocarcinoma
- Cholecalciferol
- Cholestyramine
- Chromaffin cells
- Chromogranin
- Chromogranin A (CgA)
- Chromogranin B (CgB)
- Chromogranin C (CgC)
- Chronic condition
- Cimetidine
- Cisplatin
- Cisplatin/Etoposide
- CLARINET
- Clexane
- Clinical trial
- CLO test
- Cobalamin
- Coeliac disease
- Cognitive behavioural therapies (CBT)
- Colon cancer
- Colon NET
- Colonoscopy
- Colony stimulating factor-1 receptor (CSF-1R)
- Colorectal cancer
- Combretastatin A-4 phosphate (CA4P)
- Cometriq
- Comorbidity
- COMPETE trial
- Complete blood count (CBC)
- Complex regional pain syndrome (CRPS)
- Constipation
- CONTROLNETS
- COR-003
- COR-005
- Core Biopsy
- Coronavirus
- Corticotrophin releasing hormone (CRH)
- Cortisol
- COVID-19
- Creon
- CRN00808
- CRN01941
- Crohn’s Disease
- Cryoablation
- CT enterography
- CT guided aspiration
- CT scan
- Curative surgery
- Cushing’s disease
- Cushing’s syndrome
- Cyberchondria
- Cytoreductive
- Cytotoxic
- C‑Reactive Protein (CRP)
D
- DAXX
- Debulking surgery
- Degenerative bone disease
- Depression
- Dermal fibrosis
- Dermatitis
- Desmoplasia
- DEXA scan
- Dexilent
- Dexlansoprazole
- Diabetes
- Diagnosis
- Diarrhea
- Diet
- Differential diagnosis
- Differentiation
- Diffuse hepatic steatosis
- Digestive enzymes
- DIPNECH
- Distal pancreatectomy
- Distant metastatis
- Diverticulitis
- DNA
- DNA methylation-based profiling
- Do no harm
- Doctor Google (Dr. Google)
- Dopamine
- Dopamine receptors
- DOTA-NOC
- DOTA-TATE
- DOTA-TOC
- DP1038
- Dry skin
- DUNE trial
- Duodenal NET (dNET)
- Duodenum
- Durvalumab
- Dysbiosis
E
- Early Diagnosis
- ECG
- Echocardiogram
- Eczema
- Edotreotide
- EGFR
- EKG
- ELECT study
- Electrolytes
- Eliquis (apixaban)
- EMA
- Endocrine
- Endocrine function (pancreas)
- EndolucinBeta
- Endoscopic retrograde cholangiopancreatography (ERCP)
- Endoscopic ultrasound (EUS)
- Endoscopy
- ENETS
- Enterade® advanced oncology formula
- Enterochromaffin cells
- Enterolith
- Enucleation
- EPAS1
- Epi pens
- Epidemiology
- Epidermal growth factor receptor (EGFR)
- Epinephrine
- Erythematotelangiectatic rosacea (ETR)
- Erythrocyte sedimentation rate (ESR)
- Esomeprazole magnesium
- Estrogen
- Ethanol
- Etoposide
- EUS
- Everolimus
- Exocrine cells
- Exocrine function (pancreas)
- Exocrine pancreatic insufficiency
- Explorer PET scan
- External beam radiotherapy
F
- False negative
- False positive
- Familial medullary thyroid cancer (FMTC)
- Familial NET
- Famotidine
- Fasting Gut Endocrine Profile
- Fat malabsorption
- Fat soluble vitamins
- Fatigue
- Fatty liver
- Fecal elastase test
- Fecal fat
- FH
- Fibre
- Fibroblast growth factor receptor (FGFR)
- Fight or flight
- Fine needle aspiration (FNA)
- Fluoro-18-L-Dihydroxyphenylalanine
- Fluoropyrimidine
- Fluorouracil (5-FU)
- Flushing
- Focal fatty sparing
- FODMAP
- FOLFOX
- Follicular cell
- Food allergy
- Food and Drug Administration
- Foregut
- Fosbretabulin tromethamine
- Full blood count (FBC)
- Functional tumour
G
- G protein-coupled receptors (GPCR)
- Ga68 PET/CT
- Ga68-DOTA-JR11
- Ga68-DOTANOC
- Ga68-DOTATATE
- Ga68-DOTATOC
- Ga68-FAPI PET/CT
- Ga68-OPS202
- Gallbladder
- Gallium 68 (Ga68)
- Gamma camera
- Gamma knife
- Gastric NET
- Gastrin
- Gastrin pH
- Gastrinoma
- Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET)
- Gastroenterologist
- Gastroesophageal reflux disease (GERD)
- Gastrointestinal NET (GI-NET)
- Gastroscopy
- Generator (radionuclide)
- Genetic testing
- Genetics
- Genito-urinary NET
- Germline genetic mutations
- Glucagon
- Glucagonoma
- Glycated Hemoglobin (A1C)
- Goitre
- Gonadotropin-releasing hormone (GnRH)
- Grade
- Grading
- Granulinoma
- Graves’ disease
- Growth hormone (GH)
- Gut
- Gut Flora
H
- H2 blockers
- H2 receptor antagonist (H2RA)
- Haemangioblastoma
- Haemoglobin (hemoglobin)
- Hashimoto’s disease
- HbA1c
- Head and Neck Cancer
- Heart disease
- Heat intolerance
- Hedinger syndrome
- Helicobacter pylori
- Hemoglobin
- Hepatic arterial embolization
- Hereditary cancer syndrome
- Hereditary pheochromocytoma/paraganglioma syndromes
- High Grade NEC
- High grade neuroendocrine neoplasm (NEN)
- High grade neuroendocrine tumour (NET)
- High-intensity focused ultrasound (HIFU)
- Hindgut
- HIPEC
- Histamine
- Hodgkin lymphoma
- Hormonal crisis
- Hormone therapy
- Hormones
- Hospice care
- Hotspot
- HPA axis
- Hurthle cell neoplasm
- Hydrocele
- Hydrocelectomy
- Hydrogen breath test
- Hydronephrosis
- Hyperadrenergic
- Hypercalcemia
- Hypercortisolism
- Hypergastrinemia
- Hyperglycemia
- Hyperhidrosis
- Hyperinsulinism
- Hyperparathyroidism
- Hypertension
- Hyperthermic intraperitoneal chemotherapy (HIPEC)
- Hyperthryroidism
- Hypervascularity
- Hypocortisolism
- Hypoglycemia
- Hypokalemia
- Hypotension
- Hypothalamus
- Hypothyroidism
I
- IBS
- IBS-C
- IBS-D
- IBS-M
- Ileocecal resection
- Ileum
- Immunotherapy
- Imodium
- Incidence
- Incidental diagnosis
- Incidentaloma
- Incomplete emptying
- Incurable cancer
- Indium 111-pentetreotide
- Inflammatory bowel disease (IBD)
- Inherited Cancer
- Insulin
- Insulin-like growth factor 1 (IGF-1)
- Insulinoma
- Intermediate grade NET
- International Classification of Diseases (ICD)
- International Classification of Diseases for Oncology (ICD-O)
- Intestinal ischaemia
- Intraoperative chemotherapy
- Intraoperative hypertensive crisis
- Intraoperative radiotherapy (IORT)
- Invisible illness
- Iobenguane I 131
- Ipilimumab (Yervoy)
- Irinotecan
- Iron Deficiency Anaemia
- Irritable bowel syndrome (IBS)
- Islet cell
- Islet of Langerhams
L
- Lactulose
- Lanreotide
- Lansoprazole
- Laparoscopic surgery
- Large cell neuroendocrine carcinoma (LCNEC)
- Larotrectinib sulfate
- Late Diagnosis
- Lenvatinib (Lenvima)
- Lenvima
- Leukaemia (US Leukemia)
- Levoketoconazole (Recorlev)
- Levothyroxine
- Lipase
- Liquid biopsy
- Liver
- Liver directed therapy
- Liver embolization
- Liver metastases
- Loperamide hydrochloride
- Low Grade NETs
- Lu 177 dotatate
- Lu-177
- Lung Cancer
- Lung NETs
- Lung nodules
- Lutathera
- Luteinizing hormone (LH)
- LUTIA clinical trial
- Lymph nodes
- Lymphadenectomy
- Lymphatic system
- Lymphedema
- Lymphoma
M
- Magnetic resonance imaging (MRI) scan
- Malabsorption
- Malignant
- Mammalian Target of Rapamycin (mTOR)
- Mammalian target of rapamycin (mTOR) inhibitor
- Mammogram
- MANEC
- Marcaine
- Mast cell
- Mastocytosis
- MDH2
- Medical food
- Medicines and Healthcare Products Regulatory Agency
- Medicines and Healthcare products Regulatory Agency (MHRA)
- Medullary thyroid cancer (MTC)
- Melanoma
- Melatonin
- MEN1 syndrome
- MEN2 syndrome
- MEN2A syndrome
- MEN2B syndrome
- MEN4 syndrome
- Meningioma
- Menopause
- MENX
- Merkel cell carcinoma
- Mesenteric root
- Mesentery
- Metanephrines
- Metasasis
- Metastatic Neuroendocrine Cancer
- Metronidazole
- MIBG scan
- Microsatellite instability-high (MSI-H)
- Midgut
- Mineral
- Misdiagnosis
- Mitotic count
- Mitotic rate
- Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN)
- Molecular markers
- Monoamine oxidase inhibitors (MAOIs)
- Monoclonal antibodies
- MTD201
- mTOR inhibitor
- Multi tyrosine kinase inhibitors (TKIs)
- Multidisciplinary team (MDT)
- Multikinase inhibitor
- Multimodal treatment
- Multiple Endocrine Neoplasia (MEN)
- Multiple myeloma
- MYCAPSSA®
- Myeloma
N
- Naproxen
- National Cancer Institute
- National Institute for Health and Care Excellence (NICE)
- National Institutes of Health
- Nausea
- Neoplasm
- NET Cancer Day
- NET Centre of Excellence
- NET syndromes
- NETDetect
- NETest
- NETSPOT
- NETTER-1
- NETTER-2
- Neuroblastoma
- Neuroendocrine
- Neuroendocrine cancer
- Neuroendocrine carcinoma (NEC)
- Neuroendocrine neoplasm (NEN)
- Neuroendocrine tumour (NET)
- Neurofibromatosis type 1 (NF1)
- Neurokinin A (NKA)
- Neuropeptide K
- Neurotensin
- Neurotransmitter
- Nexium
- NF1
- NHS
- Niacin
- Night sweat
- Nivolumab (Opdivo)
- Nizatidine
- NKA
- No-Carrier-Added Lutetium-177 (n.c.a. Lu177)
- Nodule
- Noid
- Non-functional tumour
- Non-small cell lung cancer (NSCLC)
- Noradrenaline
- Norepinephrine
- North American Neuroendocrine Tumor Society (NANETS)
- Novocaine
- NT-proBNP
- Nuclear medicine
- Nutrition
- Nutrizym
O
- Octreoscan (Octreotide scan)
- Octreotide (Octreotide acetate)
- Octreotide scan
- Octreotide soak
- Octreotide-RP
- Ocular Rosacea
- Omega 3
- Omeprazole
- Omeprazole and sodium bicarbonate
- ONC201
- Oncologist
- Oncolytic virus
- Ondansetron (Zofron)
- Opdivo (Nivolumab)
- Osteoblastic activity
- Osteoporosis
- Ovarian cancer
- Ovarian NEN
- Overactive thyroid
- Overdiagnosis
- Oxaliplatin (Eloxatin)
- Oxitriptan
- Oxytocin
P
- Paclitaxel
- Palliative care
- Palliative treatment
- Palpitation
- Pancreas
- Pancrease
- Pancreastatin
- Pancreatic adenocarcinoma
- Pancreatic cancer
- Pancreatic enzyme replacement therapy (PERT)
- Pancreatic insufficiency
- Pancreatic NET (PanNET)
- Pancreatic polypeptide (PP)
- Pancreatic pseudocyst
- Pancreatic uncinate process
- Pancreatin
- Pancreatogenic diabetes
- Pancreoprivic diabetes
- Pancrex
- Pantoloc control
- Pantoprazole
- Papillary thyroid cancer
- Papulopustular (acne) rosacea
- Paraganglia
- Paraganglioma
- Paraneoplastic syndromes
- Parathyroid gland
- Parathyroid hormone (PTH)
- Parathyroid NET
- Parotid gland NET
- Pasireotide
- Patent foramen ovale (PFO)
- Pathology
- PD-1/PD-L1 Inhibitors
- PDR001
- Pellagra
- Pembrolizumab (Keytruda)
- Pemetrexed disodium
- PEN-221
- Pentetreotide
- Pepcid (Famotidine)
- Peptide
- Peptide receptor radionuclide therapy (PRRT)
- Peripheral Serotonin
- Peritoneal carcinomatosis
- Pernicious anaemia
- PET Scan
- Pheochromocytoma
- Physician
- Physiological uptake
- PI3K inhibitor
- Pituitary gland
- Pituitary NET (PitNET)
- Plasma 5HIAA
- Platelet-derived growth factor receptor (PDGFR)
- Pleural Fibrosis
- pNET
- Poorly differentiated
- Post operative seroma
- PPoma
- PRCRT
- Pre-existing condition
- Prediabetes
- Pressor amines
- Prevacid (Lansoprazole)
- Prevalence
- Prilosec (Omeprazole)
- Probiotic
- Prognosis
- Progressive cancer
- Proinsulin
- Proliferative rate
- Prostaglandin
- Prostate Cancer
- Protease
- Proteasome inhibitors
- Protein kinase inhibitor
- Proton beam therapy
- Proton pump inhibitors (PPI)
- Protonix (Pantoprazole)
- PRRT
- Pruritus
- Pseudomyxoma peritonei (PMP)
- Pulmonary embolism
- Pulmonary fibrosis
- Pustule
- PV-10
R
- Rabeprazole (Aciphex)
- RADIANT
- Radiation therapy
- Radio Frequency Ablation (RFA)
- Radioactive iodine
- Radioembolization
- Radioimmunotherapy
- Radiolabelled somatostatin analogue
- Radionuclide
- Radiopeptide
- Radiotherapy
- Ranitidine (Zantac)
- Rash
- RB1
- RECORLEV (levoketoconazole)
- Rectal cancer
- Rectal NET
- Red blood count (RBC)
- Remission
- Renal cell carcinoma (RCC)
- Renal insufficiency
- RET
- Retroperitoneal Fibrosis
- Retroperitoneum
- Rhinophyma
- Right hemicolectomy
- Rosacea
- Rose Bengal
S
- Sandostatin
- Sapanisertib
- Satoreotide (Lutetium-177 OPS-201)
- SB NET
- Scan
- Scanxiety
- SCF node
- Scleroderma
- SDHA
- SDHAF2
- SDHAF2(SDH5)
- SDHB
- SDHC
- SDHD
- Secretogranin II
- SEER
- Selective Internal Radiotherapy (SIRT)
- Selective Serotonin Reuptake Inhibitor (SSRI)
- Serotonin
- Serotonin and norepinephrine reuptake inhibitor (SNRI)
- Serotonin syndrome
- Serum ferritin
- Serum serotonin
- Setrons
- SI NET
- Side effect
- Siegfried Oberndorfer
- Sigmoidoscopy
- SIGNIFOR® (Pasireotide)
- Skin NET
- Sleep hyperhidrosis
- Small cell lung cancer (SCLC)
- Small cell neuroendocrine carcinoma (SCNEC)
- Small intestine bacterial overgrowth (SIBO)
- Small intestine NET (SI NET)
- Solid tumour
- Solucin ®
- SOM230
- SomaKit TOC
- Somatoprim
- Somatostatin
- Somatostatin analogues
- Somatostatin receptor scintigraphy (SRS)
- Somatostatin receptors (SSTR)
- Somatostatinoma
- Somatuline Autogel (US: depot)
- Spartalizumab
- SPECT
- Spider Veins
- SPINET
- Splenosis
- Splenunculus
- Squamous cell carcinoma
- SSTR-PET
- St. John’s wort
- Stable cancer
- Stage
- Standardised uptake value (SUV)
- Steatorrhea
- Stem Cell
- Stereotactic body radiotherapy (SBRT)
- Stereotactic radiosurgery (SRS)
- Sternoclavicular joint
- Stomach cancer
- Stomach cramp
- Stomach ulcer
- Streptozotocin (Zanosar)
- Stress
- Subpectoral lymph node
- Substance K
- Substance P
- Succinate Dehydrogenase Subunit Genes (SDHx)
- Sulfatinib
- Sunitinib (Sutent)
- Superior mesenteric artery
- Superior mesenteric vein
- Supplements
- Supraclavicularfossa
- Supraclavicularfossa (SCF) lymph nodes
- Surgeon
- Surgery
- Surufatinib
- Surveillance
- Survivor
- Survivorship
- Sweating
- Sweet’s syndrome
- Symptom
- Syndrome
T
- Tachycardia
- Tachykinin
- Tagamet
- Targeted alpha-emitter therapy (TAT)
- Targeted therapy
- TAS-102
- Tecentriq (Atezolizumab)
- Technetium-99m (Tc-99m)
- Telangiectasia
- Telotristat ethyl (Xermelo)
- Temozolomide (Temodal)
- Terminal Cancer
- Terminal Ileum
- Testicular cancer
- Testosterone
- Tetracycline
- The 5 E’s
- Theranostics
- Thymic NEN
- Thyroid
- Thyroid cancer
- Thyroid NET
- Thyroid stimulating hormone (TSH)
- Thyroiditis
- Thyroxine (T4)
- Tidutamab
- TNM staging system
- TOCscan®
- Total gastrectomy
- Total pancreatectomy
- TP53
- TPH1
- TPH2
- Transarterial chemo embolization (TACE)
- Transarterial embolizaton (TAE)
- Transarterial radioembolization (TARE)
- Tricyclic antidepressant
- Triglycerides
- Triiodothyronine (T3)
- Tryptophan
- Tryptophan hydroxylase (TPH)
- Tuberous sclerosis (TS)
- Tumor board
- Tumour (Tumor)
- Tumour marker
- Tumour mutational burden (TMB)
- Type 1 diabetes
- Type 2 diabetes
- Type 3c diabetes
- Type 3c diabetes mellitus (T3cDM)
- Typical lung NET
- Tyramine
- Tyrosine kinase inhibitor (TKI)
V
- Vaccine
- Vanillylmandelic acid (VMA)
- Vascular
- Vascular disrupting agent (VDA)
- Vascular endothelial growth factor (VEGF)
- Vasoactive amines
- Vasoactive intestinal peptide (VIP)
- Vasoactive peptides
- Vasodilation
- Verner-Morrison syndrome
- Vertebral haemangioma
- Vimovo
- VIPoma
- Vitamin A
- Vitamin ADEK
- Vitamin B complex
- Vitamin B1
- Vitamin B12
- Vitamin B2
- Vitamin B3
- Vitamin B5
- Vitamin B6
- Vitamin B7
- Vitamin B9
- Vitamin C
- Vitamin D
- Vitamin E
- Vitamin K
- Von Hippel-Lindau (VHL) Syndrome
- Von Recklinghausen’s disease
W
#
- 111In-DTPA-D-Phe1
- 123I-Metaiodobenzylguanidine (mIBG)
- 131I-Metaiodobenzylguanidine (mIBG)
- 177Lu OPS 201
- 177Lu-DOTA-EB-TATE
- 177Lu-Edotreotide (Solucin®)
- 177Lu-PSMA-R2
- 18F-FDG
- 18F-FDOPA
- 212Pb-AR-RMX
- 212Pb-AR-RMX
- 225Ac
- 24-hour urinary catacholamines and metanephrines
- 5-Fluorouracil (5-FU)
- 5-HIAA
- 5-HT
- 5-HT3
- 5-HT3-RA
- 5-HTP
- 5-Hydrotryptophan (5-HTP)
- 5-Hydroxyindoleacetic Acid (5-HIAA)
- 5-Hydroxytryptamine (5-HT)
- 64Cu-DOTATATE
- 68Ga edotreotide (TOCscan®)
- 68Ga-PSMA-R2
I am the Washington State Ambassador for NETS AWARENESS DAY in the US. Just posted a proclamation from the governor on my page. Getting the word out on Nov 10th. Ellen Dunn
go Ellen!
Amazing how dates can hold so much meaning to us. My surgery to remove my primary tumor and the mesenteric tumor and two of the smaller tumors on my liver was performed on June 21st, 2012. It is the first day of summer, the longest daylight day of the year. It meant something to me, because I felt that I had been in such darkness for the two months prior to that, having been told I had a short time to live. And here we are, nearly two and a half years after that surgery, still with many tumors on my live, but still alive and kicking! LIFE is joyous… and we continue to wake up from time-to-time! 😉
great headline for a blog post “The Longest Day” 🙂
So good to hear you are enjoying life despite the remaining tumours, I look forward to that day too, in the meantime, while I heal, it’s good enough to know I survived and have much to look forward to again.
Wow! Scary times for you and Chris. Glad it all went well. Those surgeons deserve absolute respect for their great work.
Debbie Hooper
Hi Ronny, it was good to read of your successful surgery. I too have just had major surgery to remove two thirds of my liver etc. I had a massive carcinoid crisis as soon as the operation started in spite of octreotide top ups to my lanreotide. I then had a cardiac arrest. I was very lucky, I had a superb surgeon and team who decided to continue with the debulking anyway. 9 hours later I came out to an incredibly grateful husband, daughter and son. That was on the 26th September. I am going back for another op to remove the primary from the small intestine ( which they decided against on the original op) on 24th November. This will leave me with 7 tumours on what’s left of my Left liver lobe. Tests have shown that these are currently inactive (very good news) my Oncologist was astounded to tell me my serotonin levels were normal at 29 when just a few short weeks earlier they had been over 1000. I will continue with lanreotide and maybe have some radiotherapy on the remaining tumours (lutetium dotate) in the new year. Did you or will you be having any radiotherapy and do you have any remaining tumours? What has your follow up care consisted of and any prognosis if you have been given any. I continue to grow stronger but of course can’t help having a bit of a melt down from time to time when there is still so much unknown.
sorry to hear about the crisis problems. I read a lot about that and am thankful to have never had any issues. My liver tumours appear to be stable. When you say ‘Serotonin’, do you mean either CgA or 5HIAA? No radiotherapy planned yet but waiting on investigation into new hotspot in thyroid. I am on Lanreotide with watch and wait surveillance (notwithstanding thyroid issue). I sometimes don’t think I’m ill at all (mostly). My surgeon thinks I’ll outlive him!
The regular tests I have are for 5HIAA. I’m due in on 24th to remove primary and the anaesthetist is deciding with my Oncologist if an infusion of Octreotide is warranted or just a single shot. So sorry to hear of thyroid hotspot, please keep us posted. It’s just very difficult to talk to anybody who really understands this cancer, knowledge appears to be hard to come by. Many thanks
Best of luck with your surgery on 24th, let me know how you get on. Keep as active as you can; and as soon as you can. They will introduce you to the physio earlier than you think!