SEER Archives

07 Mar 2025

5 Comments

Neuroendocrine Cancer in England: One every 90 minutes

AwarenessIncidence, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), SEER

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000. This means NEN can now no longer be defined…

24 Jan 2025

By Ronny Allan

16 Comments

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment64Cu-DOTATATE, Axillary nodes, Bone metastases, CT scan, Degenerative bone disease, Ga68 PET/CT, Liver metastases, NETSPOT, Neuroendocrine cancer, Octreotide scan, Overdiagnosis, Physiological uptake, Radionuclide, Retroperitoneal Fibrosis, SEER, SomaKit TOC, SSTR-PET, Subpectoral lymph node, Supraclavicularfossa (SCF) lymph nodes, Surveillance, Ureter

I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive - but read on....). In 2018, my 6…

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…

18 May 2024

By Ronny Allan

30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyHodgkin lymphoma, Incidence, International Classification of Diseases (ICD), International Classification of Diseases for Oncology (ICD-O), Lung NETs, Myeloma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Prevalence, Quality of LIfe (QoL), Rectal NET, SEER, Small cell lung cancer (SCLC), Small intestine NET (SI NET), Testicular cancer, UKINETS

UPDATE AS AT 5th OCTOBER 2025 -USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially) In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the list…

31 May 2018

By Ronny Allan

17 Comments

All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours

Treatment64Cu-DOTATATE, CT scan, Degenerative bone disease, Detectnet, Ga68 PET/CT, Ga68-DOTANOC, Meningioma, NETSPOT, Neuroendocrine cancer, Octreotide scan, Osteoblastic activity, Overdiagnosis, Pancreatic uncinate process, Physiological uptake, Radioligand, Radioligand therapy, Radionuclide, SEER, SomaKit TOC, Splenosis, Splenunculus, SSTR-PET, Surveillance, Vertebral haemangioma

Cancer is a growth industry ...literally! More people are being diagnosed than ever before. Fortunately, more people are surviving than ever before. This is against a backdrop of better awareness, better screening in the big population cancers, and to a certain extent better diagnostic tools, all of which is leading to earlier diagnosis. So how does this affect Neuroendocrine Cancer? According to the latest SEER database figures for Neuroendocrine Cancer, one reason for the 7 fold increase in incidence rates since the 1970s is all of those things above including better diagnostics. This has led to a revised set of…

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