Ronny Allan - Living with Neuroendocrine Cancer - Page 4 of 16 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

14 Jan 2025

8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship111In-DTPA-D-Phe1, 123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, Advanced neuroendocrine cancer, CT enterography, CT scan, Diagnosis, DOTA-NOC, DOTA-TATE, DOTA-TOC, Echocardiogram, Endoscopic ultrasound (EUS), Endoscopy, Explorer PET scan, Fluoro-18-L-Dihydroxyphenylalanine, Ga68 PET/CT, Magnetic resonance imaging (MRI) scan, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroblastoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreoscan (Octreotide scan), Octreotide scan, Paraganglioma, Pentetreotide, Pheochromocytoma, Somatostatin analogues, Somatostatin receptor scintigraphy (SRS), SPECT, SSTR-PET, Survivorship, Technetium-99m (Tc-99m), Ultrasound, X-ray

Updated December 2025 Background Scanning 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…

13 Jan 2025

By Ronny Allan

2 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

TreatmentCarcinoid tumour, CT guided aspiration, Debulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Nutrition, SI NET, Small intestine NET (SI NET)

The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well. My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1. If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed was the urine…

11 Jan 2025

By Ronny Allan

3 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, TreatmentDebulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, SI NET, Small intestine NET (SI NET)

8th - 26th November 2010 Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control. For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease. In fact, I now know from my own research that NETs are one of a small number of cancers for which surgical debulking can in many…

10 Jan 2025

By Ronny Allan

8 Comments

Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Awareness, Patient Advocacy, SurvivorshipAsthma, Atypical carcinoid tumour, Atypical Lung NET, Lung NETs, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Originally published March 2015. Updated 10th February 2025 Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Nick is pretty good at painting politicians into a corner, trying to eek out what they really think, not the 'spin' which they are normally pretty good at. Like a lot of people, Nick's life changed when he was diagnosed with…

06 Jan 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Watch and wait or watch and worry?

Patient Advocacy, Survivorship, TreatmentCancer surveillance, Surgery, Watchful waiting

Watch and wait Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term "Neuroendocrine Neoplasms are a group of heterogenous tumours" is commonly found in many texts. Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this 'watch and wait'. Watch and wait means that you have cancer, but you do not need treatment straight away.…

01 Jan 2025

By Ronny Allan

0 Comments

A review of 2024 from Ronny Allan

Patient AdvocacyAdvanced neuroendocrine cancer, Hives, Urticaria

ReviewBlog. It was a funny old year in 2024. New challenges prevented me from exploiting the increase in followers and views of 2022/2023 following the slight slump during the pandemic, coupled with the introduction of new Facebook algorithms which treated non-profits such as myself as businesses (clearly a tactic to increase advertising revenue). Personal challenges included some strange symptoms which I self diagnose as Hives (urticaria) for the first 6 months and the last two months of 2024. This led to me to write two posts (Histamine The NET Effect and Hives (Urticaria) The NET EffectI still managed to push…

30 Dec 2024

By Ronny Allan

0 Comments

A review of December 2024 from Ronny Allan

Patient AdvocacyAdvanced neuroendocrine cancer

From Ronny Allan. Here is the monthly summary of December 2024 on RonnyAllan.NET A quiet month due to holiday and grateful for those who continued to read and share my articles while I was absent. I wish I could do more but there's just little old me! And Chris too of course for those following my exploits on Facebook Page Ronny Allan. Fortunately I have a great 2IC and admin team in my private group, so that runs as normal. Firstly, I'll list the top 10 performing blog posts in December, I can assure you there is some great information in…

24 Dec 2024

By Ronny Allan

4 Comments

A Christmas 2024 message from Ronny

Patient AdvocacyAdvanced neuroendocrine cancer, Survivorship

Background to 2024 I've only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter (X), Facebook, Newsletter or direct from a subscription to my website. All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2024 total of over 285,000 blog hits (so far), a figure higher than 2023. I've had a lot of personal issues to deal with in 2024, including some strange health stuff, so I'm delighted this…

09 Dec 2024

By Ronny Allan

0 Comments

Lanreotide – 15 more years

Patient Advocacy, TreatmentLanreotide

I first wrote this blog early in 2015 and I borrowed the term 'Four More Years' from the US presidential election campaigns, a big topic at that time. At the time of writing I had just celebrated being on Lanreotide for 4 years (my first treatment was 9th December 2010). Curiously I was only asking for another 4 years but my blog title meant I was somewhat restricted in choice of timescale! I posted the original below. I now find myself writing a follow-up post 11 years later. Had someone asked me if I thought I would be repeating this…

03 Dec 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm…

01 Dec 2024

By Ronny Allan

23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy131I-Metaiodobenzylguanidine (mIBG), 5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Adrenocorticotropic Hormone (ACTH), Biopsy, C-peptide, Calcitonin, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromaffin cells, Chromogranin, Chromogranin A (CgA), Chromogranin B (CgB), Chromogranin C (CgC), Cortisol, Electrolytes, Endocrine, Fasting Gut Endocrine Profile, Flushing, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Gastroesophageal reflux disease (GERD), Genetic testing, Glucagon, Glucagonoma, Hedinger syndrome, Histamine, Hormones, Hypertension, Insulin, Insulinoma, MEN1 syndrome, Metanephrines, Molecular markers, NETest, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurokinin A (NKA), NKA, NT-proBNP, Pancreastatin, Pancreatic cancer, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Pheochromocytoma, Plasma 5HIAA, PPoma, Proinsulin, Proton pump inhibitors (PPI), Red blood count (RBC), Renal insufficiency, Serotonin, Serum serotonin, Somatostatin, Somatostatinoma, Substance K, Substance P, Tachycardia, Tachykinin, VIPoma, Wheezing, Zollinger-Ellison Syndrome

Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…

30 Nov 2024

By Ronny Allan

0 Comments

RonnyAllan.NET – A Review of November 2024

NewslettersAdvanced neuroendocrine cancer

Here is the monthly summary of November 2024 on RonnyAllan.NETI paid little attention to 10th Nov awareness (I do enough on the other 364 days!) plus it is a personal time for me with surgery cancerversaries etc. The top post this month was totally unexpected as it was an update of quite an old entry on my website - just goes to show that some studies go on for many years! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of…

29 Nov 2024

By Ronny Allan

7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice…

28 Nov 2024

By Ronny Allan

0 Comments

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer5-HIAA, 5-Hydrotryptophan (5-HTP), B12, B3, Carcinoid syndrome, Carcinoid tumour, Hormones, Malabsorption, Melatonin, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Serotonin, Tryptophan

I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia). I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day? No Thanksgiving is complete without a turkey at the table (... so I'm told!). …

27 Nov 2024

By Ronny Allan

20 Comments

🔵 The Invisible Neuroendocrine Tumour Population

AwarenessCancer registries, Carcinoid tumour, Epidemiology, High grade neuroendocrine neoplasm (NEN), Incidence, Intermediate grade NET, Low Grade NETs, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pheochromocytoma, Prevalence

Introduction For years, patients, clinicians, and researchers have suspected that the true number of people living with neuroendocrine tumours (NETs) is far higher than official statistics suggest. Registry data only captures those who are diagnosed — but what about those who never receive a diagnosis at all? Autopsy studies, historical pathology series, and institutional observations provide a rare window into this invisible NET population. When viewed together, they reveal a consistent global pattern: NETs and related neuroendocrine tumours are under‑diagnosed, under‑recognised, and often present for years before anyone realises what they are. This refreshed article integrates 13 autopsy‑based datasets, two key epidemiologic messages, and updated…

26 Nov 2024

By Ronny Allan

0 Comments

Temozolomide and Survivin Long Peptide Vaccine (SurVaxM) for the Treatment of Patients With Progressing Metastatic Neuroendocrine Tumors

Clinical Trials and ResearchClinical trial, SurVaxM, Survivin, Temozolomide (Temodal)

What are cancer vaccines?I remember seeing a comment by a NET Specialist on twitter saying, "We need vaccines". This was in response to a tweet from another NET Specialist reporting dismal data from an immunotherapy drug for Neuroendocrine Carcinomas. In 2020/2021, the word vaccine has been used a lot, but this specialist was not inferring anti-viral treatment, he was talking about "cancer vaccines", an emerging discipline in science where vaccines act as an immunostimulant to treat cancer. This prompted me to look around and found this trial which may be of interest to you. However, before anyone gets too excited,…

26 Nov 2024

By Ronny Allan

0 Comments

18 days in November 2010 – by Ronny Allan

Inspiration, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Debulking surgery, Retroperitoneal Fibrosis

I published this 14 years to the day I walked out of hospital holding the hand of my wife Chris. After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me. Some were on the critical path and had to be sequenced. Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery. People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs…

25 Nov 2024

By Ronny Allan

0 Comments

Ronny Allan’s roundup week ending 24th November 2024

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2024/11/24/in-the-war-on-neuroendocrine-cancer-lets-not-forget-to-win-the-battle-for-better-quality-of-life/https://ronnyallan.net/2024/11/23/carcinoid-whats-in-a-name/https://ronnyallan.net/2024/11/21/running-in-the-family-multiple-endocrine-neoplasia-men/https://ronnyallan.net/2024/11/14/update-oncolytic-virus-trials-for-neuroendocrine-cancer/Twitter, X and BlueskyTwitter became X and still called twitter but Bluesky is a new kid on the block, works like twitter/X. You can get me on Bluesky by clicking here (clearly you also need a Bluesky account).https://bsky.app/profile/ronnyallan.bsky.socialFacebook - Neuroendocrine Cancer (the original)This is my main page posting blogs and other NET stuff. Click here to browse the page and follow or like please if you've not already done so. Feed below too.Facebook - World Neuroendocrine Cancer Day (the original)This is my other page posting blogs and other NET stuff but mainly focussed on…

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…

23 Nov 2024

By Ronny Allan

4 Comments

Carcinoid – What’s in a name?

AwarenessCarcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Carcinoma, Metastatic Neuroendocrine Cancer, Neoplasm, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Noid

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…

21 Nov 2024

By Ronny Allan

6 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine CancerCDKN1B, Endocrine, Familial medullary thyroid cancer (FMTC), Genetics, Hereditary cancer syndrome, MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, MEN5 syndrome, MENX, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Paraganglioma, Parathyroid gland, Pheochromocytoma, Pituitary gland

First published 2015, updated for 2025. Overview We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects. MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is…

14 Nov 2024

By Ronny Allan

10 Comments

Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Clinical Trials and ResearchAdvanced neuroendocrine cancer, AdVince, Immunotherapy, Neuroendocrine neoplasm (NEN), Oncolytic virus

Updated 28th May 2025 What exactly are Oncolytic Viruses? Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs,…

12 Nov 2024

By Ronny Allan

0 Comments

Living with Neuroendocrine Tumours – the 14 year itch

Diet and Nutrition, Patient Advocacy, Survivorship, The NET Effect Series, TreatmentDry skin, Histamine, Hives

Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch". I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching. After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter). As another example, I also noticed itchy skin could be caused…

10 Nov 2024

By Ronny Allan

0 Comments

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Patient Advocacy, TreatmentCarcinoid crisis, Carcinoid syndrome, Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery, Terminal ileum

1 year after 2 x surgery - at a ball organised by my surgeon Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 14 years after first surgery 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…

09 Nov 2024

By Ronny Allan

0 Comments

Piss off Cancer, it’s been 14 years since my “big surgery”

Awareness, Inspiration, Patient AdvocacyCarcinoid syndrome, Debulking surgery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

D Day 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 and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…

08 Nov 2024

By Ronny Allan

0 Comments

Pancreatic cysts – something or nothing?

Patient Advocacy, The NET Effect SeriesPancreatic cancer, Pancreatic cyst, Pancreatic NET (PanNET), Pancreatic pseudocyst, pNET

What are cysts? Cysts are sacs or capsules that form in the skin or inside the body. They may contain fluid or semisolid material. Although cysts can appear anywhere in the body, most frequently they live in the skin, ovaries, breasts or kidneys. Most cysts are not cancerous. What are pancreatic cysts? Pancreatic cystic lesions are being found more frequently on cross-sectional imaging studies (e.g. conventional imaging such as CT/MRI/Ultrasound). Although many of these cysts are discovered incidentally in asymptomatic patients, many have a malignant potential. Coupled with the lack of a single diagnostic test for accurate risk stratification and…

08 Nov 2024

By Ronny Allan

0 Comments

48 hours in November 2010 – Awareness and Hope from Ronny Allan

Awareness, Inspiration, Patient Advocacy, Survivorship, TreatmentCarcinoid crisis, Carcinoid syndrome, Debulking surgery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

D Day D for Diagnosis. 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 and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would…

07 Nov 2024

By Ronny Allan

0 Comments

Don’t miss these 5 posts on RonnyAllan.NET

Patient Advocacy

Just click on the pictues and read (and hopefully share!) https://ronnyallan.net/2024/07/18/neuroendocrine-cancer-is-not-a-type-of-another-cancer-period/ https://ronnyallan.net/2022/11/23/the-ecstasy-of-neuroendocrine-cancer-survivor-wilko-johnson/ https://ronnyallan.net/2018/03/16/namaste-irrfan-khan/ https://ronnyallan.net/2024/08/27/the-5-es/ https://ronnyallan.net/2017/06/08/living-with-neuroendocrine-cancer-8-tips-for-conquering-fear/ 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), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a…

06 Nov 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine CancerAntidepressant, Anxiety, Carcinoid syndrome, Diabetes, Flushing, Hyperhidrosis, Hyperthryroidism, Hypoglycemia, Menopause, Neuroendocrine cancer, Night sweat, Pheochromocytoma, Sleep hyperhidrosis, Sweating

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the…

05 Nov 2024

By Ronny Allan

0 Comments

A Review of October 2024 on RonnyAllan.NET

NewslettersAdvanced neuroendocrine cancer

Here is the monthly summary of October 2024 on RonnyAllan.NET Awareness helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the post graphic to read it. I wish I could do more but there's just little old me! And Chris too of course for those following my exploits on Facebook Page Ronny Allan. Fortunatey I have a great 2IC and admin team in my private group, so that runs as…

30 Oct 2024

By Ronny Allan

1 Comment

Piss off cancer – I’m 69.5!

InspirationCancer survivor, Survivorship

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 my body had been slowly dying.Without intervention I may not be here now to tell you this tale and who knows what would be…

28 Oct 2024

By Ronny Allan

17 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Chronic condition, Incurable cancer, Invisible illness, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine.…

27 Oct 2024

By Ronny Allan

0 Comments

I wish I had another cancer

Awareness, Inspiration, Patient AdvocacyNeuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pancreatic cancer

AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse…

26 Oct 2024

By Ronny Allan

10 Comments

PRRT – The Sequel? Alpha-emitter PRRT for Neuroendocrine Tumours (NET)

Clinical Trials and Research212Pb-AR-RMX, Ac-225, Advanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Nuclear medicine, Peptide receptor radionuclide therapy (PRRT), PRRT, Radioimmunotherapy, Radionuclide, Somatostatin analogues, Targeted alpha-emitter therapy (TAT)

Updated and reviewed June 2026. Alpha‑emitter PRRT is emerging as the next major evolution of peptide receptor radionuclide therapy. Instead of using a beta‑emitting isotope such as 177Lu, these new approaches use alpha‑particle–emitting isotopes like 212Pb or 225Ac. The goal is simple: deliver more powerful DNA‑damaging radiation directly into tumour cells while keeping the impact on surrounding tissues as low as possible. This is still experimental, but the science is compelling — and the early clinical signals are strong enough that alpha‑emitter PRRT is now considered one of the most important areas to watch in NET research. How alpha‑emitter PRRT…

25 Oct 2024

By Ronny Allan

0 Comments

Rosacea – the NET Effect

Patient Advocacy, The NET Effect SeriesCarcinoid syndrome, Flushing, Rosacea

Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on…

24 Oct 2024

By Ronny Allan

5 Comments

Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms

AwarenessAdenocarcinoma, Aretha Franklin, Endocrine function (pancreas), Exocrine cells, Hormones, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, pNET

DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Tumours arising in the pancreas can come from different cell types and behave in very different ways. Decisions about investigations, surgery, systemic therapy, surveillance, or symptom management must be made by your own specialist team, who understand your full medical history, imaging, pathology, and individual circumstances. Every patient’s situation is unique.The terms “pancreatic cancer” and “pancreatic neuroendocrine neoplasm (NEN)” describe biologically distinct diseases with different behaviours, treatments, and outcomes. The information in this article is designed to support understanding, not to…

22 Oct 2024

By Ronny Allan

1 Comment

6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid tumour, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right? Wrong, the cancer story is changing. Sure, many people do die of cancer, and that's heartbreakingly sad. But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…

22 Oct 2024

By Ronny Allan

6 Comments

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdrenal medulla, Adrenaline, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Cardiopulmonary hemodynamic instability, Catecholamines, Chromaffin cells, Cortisol, Epi pens, Epinephrine, Hormonal crisis, Hormones, Hypertension, Hypotension, Intraoperative hypertensive crisis, NET syndromes, Neuroendocrine tumour (NET), Norepinephrine, Pheochromocytoma, Pressor amines, Serotonin, Somatostatin analogues, The 5 E's, Thorson-Bioerck syndrome, Vasoactive amines, Vasoactive peptides

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…

14 Oct 2024

By Ronny Allan

0 Comments

Ronny Allan’s Weekly roundup – 7th to 13th October 2024

NewslettersAdvanced neuroendocrine cancer

Weekly roundup 7th - 13th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/11/5-blog-posts-worth-reading/ https://ronnyallan.net/2024/10/10/did-you-mean-to-lose-weight/ https://ronnyallan.net/2024/10/09/neuroendocrine-cancer-liver-directed-therapy/ https://ronnyallan.net/2024/10/07/ronny-allan-weekly-roundup-30th-september-6th-october-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…

11 Oct 2024

By Ronny Allan

0 Comments

5 blog posts worth reading

NewslettersAdvanced neuroendocrine cancer

Just click on the pictues and read (and hopefully 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), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy…

10 Oct 2024

By Ronny Allan

5 Comments

Weight – the NET Effect

Diet and Nutrition, Survivorship, The NET Effect SeriesCarcinoid syndrome, Carcinoid tumour, Cushing's disease, Cushing's syndrome, Diabetes, Gastrinoma, Hemoglobin, Hypercortisolism, Hyperthryroidism, Hypothyroidism, Insulinoma, Iron Deficiency Anaemia, Lanreotide, Levothyroxine, Malabsorption, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Pheochromocytoma, Quality of LIfe (QoL), Somatostatin analogues, Somatostatinoma, Surgery, VIPoma, Zollinger-Ellison Syndrome

Foreword After my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment. Fast forward 4 years, I had to buy some more suits as my weight was going back on. Fast forward 14 years and…

09 Oct 2024

By Ronny Allan

11 Comments

Neuroendocrine Cancer – Liver directed therapy

TreatmentAdvanced neuroendocrine cancer, Arterial embolization, Bland liver embolization, Carcinoid crisis, Cryoablation, Drug-Eluting Beads DEB-TACE, High-intensity focused ultrasound (HIFU), Hormonal crisis, Liver directed therapy, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Radioembolization, Selective Internal Radiotherapy (SIRT), Trans arterial embolization (TAE), Transarterial chemo embolization (TACE), Transarterial radioembolization (TARE)

May 2026. Updated to include Transarterial Chemoperfusion (TACP) Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs). Spread to the liver…

07 Oct 2024

By Ronny Allan

2 Comments

Ronny Allan – weekly roundup 30th September – 6th October 2024

NewslettersAdvanced neuroendocrine cancer

Weekly roundup 30th - 6th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/05/ronny-allan-feedback-recommendations-and-reviews/ https://ronnyallan.net/2024/10/04/ronny-allan-background-to-my-diagnosis-and-treatment/ https://ronnyallan.net/2024/10/03/neuroendocrine-neoplasms-high-grade/ https://ronnyallan.net/2024/09/30/a-review-of-september-2024-on-ronnyallan-net/ https://ronnyallan.net/2024/09/30/ronny-allans-weekly-roundup-23rd-29th-september-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…

05 Oct 2024

By Ronny Allan

0 Comments

Ronny Allan – Feedback, Recommendations and Reviews

Patient AdvocacyAdvanced neuroendocrine cancer

I'm so proud to receive many reviews from many healthcare and cancer organisations. The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations. Too many to repeat here and I even survived some of them as they no longer exist. Dr Mark LewisDr Eric Liu Dr Julie Hallet - NET Surgeon Dr Heloisa Soares - to follow Other Feedback received Josh Pyle, Senior Marketing Director for WEGO Health and Co-Founder of River Otter Interactive Inc ... " It is hard to find the quality of content and mix…

04 Oct 2024

By Ronny Allan

0 Comments

Ronny Allan – Background to my Diagnosis and Treatment

Patient AdvocacyAdvanced neuroendocrine cancer

Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control). This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score. It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia. After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…

03 Oct 2024

By Ronny Allan

5 Comments

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient AdvocacyBlue Book, Differentiation, Grading, High grade neuroendocrine neoplasm (NEN), High grade neuroendocrine tumour (NET), Ki-67, Large cell neuroendocrine carcinoma (LCNEC), MANEC, Merkel cell carcinoma, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), Molecular markers, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Poorly differentiated, Small cell lung cancer (SCLC), Small cell neuroendocrine carcinoma (SCNEC), Somatostatin receptors (SSTR), Well differentiated

Reviewed and updated 3rd Jan 2025 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short. Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming. I too am guilty of having a large Facebook site falling into this category. It's little wonder that those with high grade disease can often feel like the forgotten patient group. …

30 Sep 2024

By Ronny Allan

0 Comments

A Review of September 2024 on RonnyAllan.NET

NewslettersAdvanced neuroendocrine cancer

Here is the monthly summary of September 2024 on RonnyAllan.NET The top post this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the post graphic to read it. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was away for some of…

30 Sep 2024

By Ronny Allan

0 Comments

Ronny Allan’s weekly roundup – 23rd – 29th September 2024

NewslettersAdvanced neuroendocrine cancer

Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…

29 Sep 2024

By Ronny Allan

2 Comments

F*** you cancer, I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking…

28 Sep 2024

By Ronny Allan

0 Comments

Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Clinical Trials and ResearchClinical trial, Lanreotide, Octreotide, Peptide receptor radionuclide therapy (PRRT), Somatostatin analogues

One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc. Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are…