Patient Advocacy Archives

03 Dec 2024

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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…

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…

26 Nov 2024

By Ronny Allan

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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…

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…

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

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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…

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…

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…

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…

05 Oct 2024

By Ronny Allan

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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. …

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…

24 Sep 2024

By Ronny Allan

0 Comments

Seriously, I’m not a zebra!

Awareness, Patient AdvocacyZebra

One thing I've discovered when posting about this subject..... I'm not alone. In fact, I was actually surprised how many people cannot abide the infatuation and borderline cultish adulation with black and white striped animal themed rubbish attached to everything they do (thus the cult tag). It regularly emanates from certain parts (but thankfully not all) of the NET community, worryingly including certain doctors who should be focussed on Oncology, not Zoology. The main issue I have within the NET community is the 1940s thinking in the days when science and statistics were not advanced as they both are today.…

22 Sep 2024

By Ronny Allan

9 Comments

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentConstipation, Depression, Dry skin, Fatigue, Goitre, Graves’ disease, Hashimoto's disease, Heat intolerance, Hormones, Hyperthryroidism, Hypothyroidism, Lanreotide, Levothyroxine, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palpitation, Pituitary gland, Quality of LIfe (QoL), Radioactive iodine, Somatostatin analogues, Sweating, Thyroid stimulating hormone (TSH), Thyroiditis, Thyroxine (T4), Triiodothyronine (T3)

From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid…

21 Sep 2024

By Ronny Allan

0 Comments

Weekly Roundup 9th – 15th September 2024

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Weekly roundup 9th - 15th 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. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…

19 Sep 2024

By Ronny Allan

1 Comment

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Cancer, Cancer research, Cure, Neuroendocrine neoplasm (NEN)

Hope is great, false hope is not. Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing…

15 Sep 2024

By Ronny Allan

2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyNeuroendocrine cancer, Quality of LIfe (QoL)

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor i.e.…

11 Sep 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer surveillance, Scanxiety

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance scans and other tests) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…

10 Sep 2024

By Ronny Allan

2 Comments

Ever wonder what caused your Neuroendocrine Cancer?

Patient AdvocacyCancer causes, Neuroendocrine cancer

When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial. With the latter, the denial normally wears off as you finally accept the predicament. In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my…

09 Sep 2024

By Ronny Allan

0 Comments

Weekly round-up 2nd – 8th September 2024

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Travel with Ronny

Weekly round-up (2nd - 8th September 2024) News 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. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…

07 Sep 2024

By Ronny Allan

2 Comments

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdrenal glands, Benign NET, Breast NEN, Bronchopulmonary Neuroendocrine Neoplasms (BP NEN), Gastrointestinal NET (GI-NET), Genito-urinary NET, Lung NETs, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Paraganglia, Parathyroid NET, Parotid gland NET, Skin NET, Thyroid NET, World Health Organisation (WHO)

One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…

06 Sep 2024

By Ronny Allan

11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Distant metastatis, Hormones, Hospice care, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palliative care, Palliative treatment, Quality of LIfe (QoL), Syndrome

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…

05 Sep 2024

By Ronny Allan

0 Comments

Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Patient Advocacy, TreatmentNon-functional tumour, Pancreatic NET (PanNET), Surgery, Surveillance

Abstract. Results from a retrospective review demonstrated significant increases in the use of observation in patients with small nonfunctional pancreatic neuroendocrine tumors (NF-pNETs) from 2015 to 2020, as published in JAMA Surgery. Researchers also found that patients seen at academic centers were more likely to undergo observation compared with those seen at nonacademic centers.Currently, experts are uncertain of the metastatic potential of NF-pNETs, and the potential morbidity linked with pancreatic surgery, as noted in the study. This may be associated with patients opting for surgery vs active surveillance, although recent guidelines endorse the use of active surveillance backed by retrospective data.The…

05 Sep 2024

By Ronny Allan

0 Comments

Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Patient Advocacy, TreatmentPancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT)

Abstract. NEOLUPANET was a multicentre, single-arm, phase II trial, conducted between March 2020 and February 2023 at eight Italian institutions. Patients- non-functioning pancreatic neuroendocrine tumours (NF-PanNETs) at high risk of recurrence, with positive uptake on 68Ga-labelled DOTA PET. They underwent neoadjuvant 177Lu-labelled DOTA0-octreotate (177Lu-DOTATATE) therapy followed by surgical resection at an acceptable complication rate, with no postoperative death. The majority of patients had a partial response without any progressive disease. Neoadjuvant means treatment given as a first step to shrink a tumour before the main treatment, which is usually surgery. NF-PanNETs are more common than their functional counterparts. NF-PanNETs display…

04 Sep 2024

By Ronny Allan

0 Comments

Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Patient Advocacy, TreatmentPeptide receptor radionuclide therapy (PRRT), Stereotactic body radiotherapy (SBRT)

I've written about Peptide Receptor Radionuclide Therapy (PRRT) many times and also written summary of evidence of the use of Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Neoplasms (NENs). The latter is external beam radiotherapy whereas the former is a totally different technique delivering radiation combined with somatostatin analogues via an intra-venous (IV) route. Both have the same aim, to eradicate or reduce tumour bulk. External beam (EB) has been around for some time but PRRT is relatively new. That said, EB in the form of SBRT is state of the art EB radiotherapy. I will link in those two blog…

04 Sep 2024

By Ronny Allan

4 Comments

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, TreatmentCarcinoid syndrome, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lanreotide, NET syndromes, Neuroendocrine tumour (NET), Somatostatin analogues, Somatuline Autogel (US: depot)

Update 4th September 2024. I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground. My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere. It makes me think that…

04 Sep 2024

By Ronny Allan

8 Comments

Serotonin – it’s a no-brainer!

Patient Advocacy5-Hydrotryptophan (5-HTP), 5-Hydroxytryptamine (5-HT), Antidepressant, Anxiety, Brain serotonin, Carcinoid rage, Carcinoid syndrome, Carcinoid tumour, Depression, Hormones, Neuroendocrine tumour (NET), Niacin, Peripheral Serotonin, Selective Serotonin Reuptake Inhibitor (SSRI), Serotonin, Serotonin syndrome, Thorson-Bioerck syndrome

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 does not constitute an endorsement of that service, trial/study or therapy by…

30 Aug 2024

By Ronny Allan

7 Comments

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipIncurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. So, when I wrote my blog post "Living with…

29 Aug 2024

By Ronny Allan

20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Antidepressant, Anxiety, Blood brain barrier (BBB), Bradykinin, Brain serotonin, Cancer anger, Carcinoid heart disease, Carcinoid rage, Carcinoid syndrome, Depression, Desmoplasia, Diarrhea, Dopamine, Endocrine, Flushing, Foregut, Hindgut, Histamine, Hormones, Monoamine oxidase inhibitors (MAOIs), NET syndromes, Neuroendocrine, Neurotransmitter, Norepinephrine, Nutrition, Oxitriptan, Prostaglandin, Selective Serotonin Reuptake Inhibitor (SSRI), Serotonin, Serotonin and norepinephrine reuptake inhibitor (SNRI), Serotonin syndrome, Serum serotonin, St. John's wort, Thorson-Bioerck syndrome, TPH1, TPH2, Tricyclic antidepressant, Tryptophan, Tryptophan hydroxylase (TPH)

This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to…

28 Aug 2024

By Ronny Allan

0 Comments

Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Awareness, Patient AdvocacyBenign, Benign NET, Differentiation, Malignant, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Dear Readers Another week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently…

27 Aug 2024

By Ronny Allan

5 Comments

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Alcohol, Alcohol flushing reaction, Carbocaine, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diet, Epinephrine, Ethanol, Flushing, Hypertension, Intraoperative hypertensive crisis, Lanreotide, Liver metastases, Malabsorption, Marcaine, NET syndromes, Novocaine, Octreotide, Paraganglioma, Pheochromocytoma, Probiotic, Surgery, Syndrome, The 5 E's

The 5 Es was a good idea but the boundary was never properly defined. I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…

17 Aug 2024

By Ronny Allan

9 Comments

Don’t worry, I really am OK!

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipSurvivorship

I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer" and a similar article from Fred Hutch in USA "Why people keep quiet about their battle with cancer" is also interesting reading. The usual range of reactions and fears can be found in these stories and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'. For the uninitiated, I'm…

14 Aug 2024

By Ronny Allan

9 Comments

2024 Update from Ronny Allan: Reassuringly stable!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Surveillance

In every surveillance session I’ve had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable! In 2023, I was given the headline of "No evidence…

10 Aug 2024

By Ronny Allan

0 Comments

Incidental findings and Incidentalomas – NET or NOT

Patient AdvocacyBenign, Benign tumour, Differential diagnosis, Incidentaloma, Liver cyst, Liver lesion, Lung nodule, Physiological uptake, Renal cyst, Thyroid nodule

During my diagnostics, I presented to my general practitioner as someone with symptoms of iron deficiency anaemia 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 laboratory testing and imaging devices are there to not only back up the a doctor's clinical hypotheses but also to test them, i.e. these laboratory tests and imaging checks may lead to others. Differential checks are not misdiagnoses, they are part of the…

09 Aug 2024

By Ronny Allan

0 Comments

Renal Cysts – something or nothing?

Patient AdvocacyCancer surveillance, Kidney, Renal cyst

When I was diagnosed and subjected to several CT scans, each one noted the existence of a renal cyst. I was told it was nothing to worry about although I did find the size worrying on the basis I didn't think the average kidney could be so big to house a 55mm cyst! That was back in 2010 and they still mention that cyst today, but it no longer worries me. Like many cysts in the human body, these incidental findings on diagnosis are pretty common. How Common are Renal CystsSimple renal cysts are very common, and the incidence increases with…

06 Aug 2024

By Ronny Allan

0 Comments

Biopsies – tissue is the issue!

Patient AdvocacyBiopsy, Bone marrow biopsy and aspiration, Bronchoscopy, Core Biopsy, Endoscopic ultrasound (EUS), Endoscopy, EUS, Fine needle aspiration (FNA), Laparoscopic surgery, Liver metastases

First published 19th July 2023. Major update on 6th August 2024 to including key marker and histopathological tissue biomarkers used in Neuroendocrine Neoplasms (NENs). My diagnostic background On 19th July 2010, I had a liver biopsy. This followed some low haemoglobin (Hb) and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, the output from that CT confirmed something was drastically wrong. Clearly CT scans don't diagnose cancer including grade, so I eventually had to have a liver…

03 Aug 2024

By Ronny Allan

0 Comments

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Latest ENETS Guidelines, Patient Advocacy

Continuing with the output of updated clinical guidelines from ENETS, this paper is unlike the others so far in 2022/23/24 where the guidelines were set against several clinical questons for particular scenarios (presumably common in the NET patient population). So far,the clinical guidelines have centred on Gastroenteropancreatic Neuroendocrine Neoplasms (GEP NENs) (Neuroendocrine Carcinoma (NEC) and Neuroendocrine Tumours (NET)). The latest output comes in a different format than the GEP NEN output but is based on Lung NETs, i.e. well differeniated Lung NETs. I'm hoping it is a precurser to a set of updated Lung NEN guidelines. Although, as you will…

01 Aug 2024

By Ronny Allan

2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Appendiceal NET, Carcinoid syndrome, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Gastric NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Immunotherapy, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic cancer, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

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…

31 Jul 2024

By Ronny Allan

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A Review of July 2024 on RonnyAllan.NET

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of what we all achieved in July 2024. Something new, something blue and some borrowed too! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I was literally on holiday for the enture month of July but still managed over 25,000 blog views. I wish I could do more but there's just little old me! And Chris too of…

27 Jul 2024

By Ronny Allan

0 Comments

The Hidden Pheochromocytoma

Awareness, Patient AdvocacyParaganglioma, Pheochromocytoma

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET). I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all. If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone. The other interesting data I found is that many are not discovered…

26 Jul 2024

By Ronny Allan

50 Comments

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancerversary, Carcinoid syndrome, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Prognosis, Quality of LIfe (QoL), Survivor

I didn't expect to be here but I am I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis,…

25 Jul 2024

By Ronny Allan

2 Comments

A Neuroendocrine Cancer diagnosis: I didn’t even feel ill

Awareness, Inspiration, Patient AdvocacyBiopsy, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…

23 Jul 2024

By Ronny Allan

6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Invisible illness

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…

Category: Patient Advocacy