Update November 2025. This new document from the same surgeon and NET team below has further justified why they now adopt a totally different approach to nearly everyone else and they can back it up with evidence. This followed the updated blog below "Do we need a new model for carcinoid crisis in NETs?".  It looks like they have deployed this 'new model' given their statement "

Edited and reviewed 4th September 2024 My own experience At my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs.

BREAKING NEWS    I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary.  However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer.  As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it.

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! 

Hot off the press - 22 Oct 2025 Cambridge treats first NHS cancer patient A Cambridge patient has become the first person in Europe to receive cutting-edge histotripsy treatment outside of a clinical trial, after the technology was fast-tracked by the Government - marking a major milestone in NHS cancer care. Treatment for Histotripsy Addenbrooke’s is currently setting up a referral pathway, so the histotripsy technology can be made available to patients at Addenbrooke’s and beyond.

Reframing Neuroendocrine Neoplasms: Beyond “Rare” Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late.  The Global Reality - examples…

On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Where do I start ........  well, there are three main things wrong with Neuroendocrine Cancer awareness.  Ancient Misnomers 1.  The community remains entrenched in 1907 terminology which needs to be brought into 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century.

Reports of my death have been greatly exaggerated….. the pitfalls of Artificial Intelligence (AI) I recently discovered — to my great amusement - that someone referred to me as “the late Ronny Allan.” While I appreciate the dramatic flair, I’d like to reassure everyone that I’m still very much alive, caffeinated, and actively moderating, educating, and occasionally ranting about neuroendocrine cancer. 

OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'.

Sincer 2015, my message has not changed.  My message continues to be justified because since then, many important voices in the NEN community have repeated it!  However, there has been, and still remains, some instransigence, although some of that has now buckled in the face of the recent US SEER statistics. However, the buckling needs to spread and expand.  Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking.

Sincer 2015, my message has not changed.  My message continues to be justified because since then, many important voices in the NEN community have repeated it!  However, there has been, and still remains, some instransigence, although some of that has now buckled in the face of the recent US SEER statistics. However, the buckling needs to spread and expand.  Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking.

OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'.

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. 

Background This subject of semaglutide (e.g. Ozempic) is appearing regularly in my private Facebook group, and I can see there might be some confusion out there.  But first, I wanted to state that this post is not about me saying semaglutide (or whatever brand names are included in this post) is something you should be taking or not. That is the responsibility of your doctors, in conjunction with you, the patient. 

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that…

Early diagnosis of late stage cancer What a strange title for a cancer blog post!  However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me…

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. 

18th October 2025.  Exelixis Announces Results from Subgroup Analysis of CABINET Phase 3 Pivotal Trial Evaluating CABOMETYX® (cabozantinib) in Advanced Lung and Thymic Neuroendocrine Tumors at ESMO 2025 | Exelixis, Inc. – CABOMETYX reduced the risk of disease progression or death by 81% versus placebo in patients with advanced lung or thymic neuroendocrine tumors (NET) – – The lungs are the second most common NET site of origin, yet limited treatment options are available…

During my diagnostics, I presented to my general practititioner as someone with symptoms of iron deficiency anemia with some weight loss (not a lot but some).  The GP at this point had no alternative but to refer me to secondary care where they had the tools to investigate further - e.g. imaging and endoscopies. The use of laborortory testing and imaging devices are there to not only back up the a doctor's clinical hypotheses but also to test them, i.e.

Reviewed and edited 6th December 2024 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the US SEER database report issued in 2017 and 2025; and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.

Update 25th September 2025 - Crinetics Crinetics Announces FDA Approval of PALSONIFY™ (paltusotine) for the Treatment of Acromegaly in Adults - September 25, 2025 Read more - click here.  Learn more about PALSONIFY BY clicking here.  Note:  Approval of somatostatin analogues for acromegaly normally precedes approval for NET.  UPDATE 14th March 2024 Results from Paltusotine Carcinoid Syndrome Open Label Phase 2 Study, A Randomized, Parallel Group Study to Evaluate the Safety, Pharmacokinetics, and Dose Response of Paltusotine Treatment in Subjects with Carcinoid Syndrome…

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. 

Facebook X Pinterest WhatsApp Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT).  The company is formally known as  ITM Isotopen Technologien München. One of their pipeline developments is 177Lu-Edotreotide in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET).