Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?
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…
Neuroendocrine Cancer – my liver surgery
From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place…
Ronny Allan – Every picture tells a story
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
Neuroendocrine Cancer: Diagnosing the Undiagnosed
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
Neuroendocrine Cancer – If you can see it, you can detect it!
Updated December 2025BackgroundScanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and…
Neuroendocrine Cancer: Glossary of Terms
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc. Ditto for B to Z. Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results
Background In my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports. The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same. Most have a built-in CT scan, much less frequently an MRI scan. Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the…
Somatostatin Receptors
Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge. I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic! Somatostatin It's important to understand this hormone and…
Neuroendocrine Cancer: My experience with Lanreotide Ipsen
On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here. My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would…
No Fear or Know Fear?
Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all different. The article drew in a lot of non-NET people who were attracted by the original title. It did spread a little bit of awareness but I guess the dozens of bunjee jumpers and other dangerous sports types quickly left when they found out it wasn't about either the famous sports clothing shop or jumping off large structures with NO FEAR! The Original ArticleIt's that time again, every 6 months I need some checks. I've done…
Diagnosed with Neuroendocrine Tumours: Hurry up and wait
When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…
Neuroendocrine Cancer – Horrible Hormones
Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…
Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer
Edit 21st January 2021. The imaging time window of 64Cu-DOTATATE positron emission tomography/computed tomography (PET/CT) for patients with neuroendocrine neoplasms can be expanded from one hour to three hours post-injection, according to new research published in the January 2021 issue of The Journal of Nuclear Medicine. Read more here Edit 4th September 2020. 64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020. Expanded Access Program via clinical trial now recruiting -…
All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours
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…
Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD
I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…
Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma
Updated 19th August 2025I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the…
Neuroendocrine Cancer – Exciting Times Ahead!
In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time. There's even more in the pipeline and I'm hoping…