It’s only a couple of weeks since I celebrated my 15th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2. Thinking back to that period of my life, I’m happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it’s a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn’t take this diagnosis lying down, I stood up and marched forward, diverting around obstacles on the way. I must also add my wife Chris, who inspires and motivates me to keep going. I class her as a ‘virtual member’ of my MDT!
The NET expertise available to me meant that I was provided with early and well considered treatment options, including 3 surgeries by experts in the field of neuroendocrine and endocrine diseases, a liver emobolisation and the use of somatostatin analogues since shortly after diagnosis to tackle the clear evidence of carcinoid syndrome. That was finally suppressed 6 months after diagnosis. Thinking back, it did explain the odd symptoms I was experiencing prior to diagnosis. As stability improved, so my surveillance periods were lengthened, first to six months at year 5, then to 12 months at year 10. There was a blip at year 8 where it increased but that just shows the versality and reaction of a professional MDT.
2025 Plan . Lanreotide will continue at 90mg as it has been since the first injection in Dec 2010. My Oncologist said it is reasonable to assume my low volume metastatic disease is being suppressed by Lanreotide. My blood tests are generally OK, everything is within tolerable limits. I’m definitely healthier today than I was at diagnosis, despite the 15 years of advancing age. I’m also much fitter than I have been for a good while and I remain motivated to maintain a normal life. I go back for another round of surveillance in 12 months. Further lengthening of my surveillance period beyond a year remains a possibility. We shall see next year!
Thank you for reading and joining me for this 15 year journey or at least since you’ve been following my blog or social media pages!
Ronny Allan – Background to my Diagnosis and Treatment
You can read my clinical history by clicking here .
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123I-Metaiodobenzylguanidine (mIBG)
131I-Metaiodobenzylguanidine (mIBG)
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Exocrine pancreatic insufficiency
Explorer PET scan
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extra
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Familial medullary thyroid cancer (FMTC)
Familial NET
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Fasting Gut Endocrine Profile
Fat malabsorption
Fat soluble vitamins
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FCarboSt
Fecal bile acid test
Fecal elastase test
Fecal fat
FH
Fibre
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Fibrosis
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Fine needle aspiration (FNA)
Flu
Fluorine-18
Fluoro-18-L-Dihydroxyphenylalanine
Fluoropyrimidine
Fluorouracil (5-FU)
Flushing
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FODMAP
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Follicular cell
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Food and Drug Administration
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G protein-coupled receptors (GPCR)
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Gastric NET
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Gastrin pH
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Gastrointestinal NET (GI-NET)
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Generic drugs
Genetic testing
Genetics
Genito-urinary NET
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Gerson therapy
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GLP-1
Glucagon
Glucagonoma
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Goitre
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Grading
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Green tea
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Gut Flora
H2 blockers
H2 receptor antagonist (H2RA)
Haemangioblastoma
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Hashimoto’s disease
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Heat intolerance
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Hereditary cancer syndrome
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High Grade NEC
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High grade neuroendocrine tumour (NET)
High Residue Diet
High-intensity focused ultrasound (HIFU)
Hindgut
Histamine
Histotripsy
Hives
Hodgkin lymphoma
Hormonal crisis
Hormone therapy
Hormones
Hospice care
Hotspot
HPA axis
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Hydrocele
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Hydrogen breath test
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Hyperadrenergic
Hypercalcemia
Hypercortisolism
Hypergastrinemia
Hyperglycemia
Hyperhidrosis
Hyperinsulinism
Hyperparathyroidism
Hypertension
Hyperthermic intraperitoneal chemotherapy (HIPEC)
Hyperthryroidism
Hypervascularity
Hypocortisolism
Hypoglycemia
Hypokalemia
Hypotension
Hypothalamus
Hypothyroidism
IBS
IBS-C
IBS-D
IBS-M
Ileum
Immunotherapy
Imodium
Incidence
Incidental diagnosis
Incidentaloma
Incomplete emptying
Incurable cancer
Indium 111-pentetreotide
Inflammatory bowel disease (IBD)
Insulin
Insulin-like growth factor 1 (IGF-1)
Insulinoma
Interferon alpha (IFNα)
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 (Campto)
Iron Deficiency Anaemia
Irreversible electroporation (IRE)
Irritable bowel syndrome (IBS)
Islet cell
Islet of Langerhams
JR11
Kallikrein
Karzinoide
Ketogenic diet
Keytruda
Ki-67
Kidney
Lactose intolerance
Lactulose
Laetrile (amygdalin or vitamin B17)
Lanreotide
Lansoprazole
Laparoscopic surgery
Large cell neuroendocrine carcinoma (LCNEC)
Late Diagnosis
Lenvatinib (Lenvima)
Lenvima
Leukaemia (US Leukemia)
Levoketoconazole (Recorlev)
Levothyroxine
Lipase
Liquid biopsy
Liver
Liver cyst
Liver directed therapy
Liver embolization
Liver lesion
Liver metastases
Loperamide hydrochloride
Low Grade NETs
Low residue diet
Lu 177 dotatate
Lu-177
lung
Lung Cancer
Lung NETs
Lung nodule
Lutathera
Luteinizing hormone (LH)
Lutetium 177
LUTIA clinical trial
Lymph nodes
Lymphadenectomy
Lymphatic system
Lymphedema
Lymphoma
Lynch syndrome
Magnetic resonance imaging (MRI) scan
Malabsorption
Malignant
Malvern Hills
Mammalian target of rapamycin (mTOR) inhibitor
Mammogram
MANEC
Marcaine
Mast cell
Mastocytosis
MDH2
Medical food
Medicines and Healthcare Products Regulatory Agency
Medullary thyroid cancer (MTC)
Melanoma
Melatonin
MEN1 syndrome
MEN2 syndrome
MEN2A syndrome
MEN2B syndrome
MEN4 syndrome
MEN5 syndrome
Meningioma
Menopause
MENX
Merkel cell carcinoma
Mesenteric Fibrosis
Mesenteric root
Mesentery
Metanephrines
Metastatic Neuroendocrine Cancer
MIBG scan
Microsatellite instability-high (MSI-H)
Midgut
Mineral
Misdiagnosis
Mitotic count
Mitotic rate
Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN)
mNRA
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
Mushrooms
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National Cancer Institute
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National Institutes of Health
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NET Cancer Day
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NETSPOT
NETTER-1
NETTER-2
NETTER-3
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Neuroendocrine carcinoma (NEC)
Neuroendocrine neoplasm (NEN)
Neuroendocrine tumour (NET)
Neurofibromatosis type 1 (NF1)
Neurokinin A (NKA)
Neurologic paraneoplastic syndromes
Neuropeptide K
Neurotensin
Neurotransmitter
Nexium
NF1
NHS
Niacin
Night sweat
Nivolumab (Opdivo)
Nizatidine
NKA
No evidence of disease (NED)
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
Octreo-ratiopharm®
Octreoscan (Octreotide scan)
Octreotide
Octreotide (Octreotide acetate)
Octreotide scan
Octreotide soak
Octreotide-RP
Olaparib
Olatuton®
Omega 3
Omeprazole
Omeprazole and sodium bicarbonate
ONC201
Oncologist
Oncolytic virus
Ondansetron (Zofron)
Opdivo (Nivolumab)
Osteoblastic activity
Ovarian cancer
Ovarian NEN
Overactive thyroid
Overdiagnosis
Oxaliplatin (Eloxatin)
Oxitriptan
Oxytocin
Paclitaxel (Taxol)
Palliative care
Palliative treatment
Palpitation
Pancreas
Pancrease
Pancreastatin
Pancreatic adenocarcinoma
Pancreatic cancer
Pancreatic cyst
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
Paraganglia
Paraganglioma
Paraneoplastic syndromes
Parathyroid gland
Parathyroid NET
Parotid gland NET
PARP Inhibitor
Partial remission
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
Procaspase-activating compound-1 (PAC-1)
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)
PTHrPoma
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Pulmonary fibrosis
PV-10
Q-Octreotide
Q-Sphera
Quality of LIfe (QoL)
Rabeprazole (Aciphex)
RADIANT
Radiation therapy
Radio Frequency Ablation (RFA)
Radioactive iodine
Radioembolization
Radioimmunotherapy
Radiolabelled somatostatin analogue
Radioligand
Radioligand therapy
Radionuclide
Radiopeptide
Radiotherapy
Ranitidine (Zantac)
Rash
RECORLEV (levoketoconazole)
Rectal cancer
Rectal NET
Red blood count (RBC)
Remission
Renal cell carcinoma (RCC)
Renal cyst
Renal insufficiency
Residue (food)
RET
Retroperitoneal Fibrosis
Retroperitoneum
Right hemicolectomy
Rosacea
Rose Bengal
Sandostatin
Sapanisertib
SARTATE™
Satoreotide (Lutetium-177)
SB NET
Scan
Scanxiety
SCF node
Scleroderma
SDHA
SDHAF2
SDHAF2(SDH5)
SDHB
SDHC
SDHD
SEER
Selective Internal Radiotherapy (SIRT)
Selective Serotonin Reuptake Inhibitor (SSRI)
Semaglutide
Serotonin
Serotonin and norepinephrine reuptake inhibitor (SNRI)
Serotonin syndrome
Serum 7αC4 test
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
special
SPECT
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
SurVaxM
Surveillance
Survivin
Survivor
Survivorship
Sweating
Sweet’s syndrome
Symptom
Syndrome
Syndrome of inappropriate antidiuretic hormone secretion (SIADH)
Tachycardia
Tachykinin
Tagamet
Talazoparib
Targeted alpha-emitter therapy (TAT)
Targeted therapy
Tecentriq (Atezolizumab)
Technetium-99m (Tc-99m)
Telotristat ethyl (Xermelo)
Temozolomide (Temodal)
Teratoma
Terbium-161 (161Tb-DOTA-LM3)
Terminal cancer
Terminal ileum
Testicular cancer
Testosterone
The 5 E’s
Theranostics
Thorson-Bioerck syndrome
Thymic NEN
Thyroid
Thyroid cancer
Thyroid NET
Thyroid nodule
Thyroid stimulating hormone (TSH)
Thyroiditis
Thyroxine (T4)
Tidutamab
TNM staging system
TOCscan®
Total gastrectomy
Total pancreatectomy
TPH1
TPH2
TraceNET
Trans arterial embolization (TAE)
Transarterial chemo embolization (TACE)
Transarterial embolizaton (TAE)
Transarterial radioembolization (TARE)
Travel with Ronny
Triapine
Tricyclic antidepressant
Triglycerides
Triiodothyronine (T3)
Tryptophan
Tryptophan hydroxylase (TPH)
Tuberous sclerosis (TSC)
Tumor board
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)
UKINETS
Ulcerative colitis
Ultrasound
Underactive thyroid
Ureter
Urticaria
Vaccine
Vanillylmandelic acid (VMA)
Vascular
Vascular disrupting agent (VDA)
Vascular endothelial growth factor (VEGF)
Vasoactive amines
Vasoactive intestinal peptide (VIP)
Vasoactive peptides
Vasodilation
Vasosuppressors
Vepesid)
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
VMT-𝛼-NET
Von Hippel-Lindau (VHL) Syndrome
Von Recklinghausen’s disease
Watchful waiting
Water soluble vitamins
Watery diarrhea
Well differentiated
Wermer syndrome
Wheezing
Whipple procedure
Whipple’s triad
White blood count (WBC)
World Health Organisation (WHO)
X-ray
XELOX. Oxaliplatin (Eloxatin)
Xermelo (Telotristat ethyl)
Yervoy
Yttrium 90 (Y90)
Zantac
Zebra
Zinc
Zofron
Zollinger-Ellison Syndrome
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