Ronny Allan - Living with Neuroendocrine Cancer - Page 6 of 15 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

01 Jul 2024

4 Comments

Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…

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30 Jun 2024

0 Comments

Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message

Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid, Neuroendocrine cancer, Zebra

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. I respectfully suggest they stop it as I believe they are doing patients and NET awareness a disservice. A recent…

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29 Jun 2024

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Pancreatic NET with carcinoid syndrome – not as common as you think

Pancreatic NET with carcinoid syndrome – not as common as you think

Patient AdvocacyCarcinoid syndrome, Diarrhea, Flushing, Pancreatic NET (PanNET)

Why do I need to write about this? I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome". Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites. It's a highly unusual scenario. Why…

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27 Jun 2024

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Sometimes you gotta climb that hill …….. twice!

Sometimes you gotta climb that hill …….. twice!

Inspiration, Patient AdvocacyCancer survivor, Survivorship

Climbing hills are tough, but within my limits, I make the effort and always enjoy the end product, the views and the feeling of accomplishment. The lead picture is a before and after, 2018 and June 2024. Some things are different including dress choice, the weather and my hair colour! Believe it or not, at 68 years old, I'm fitter on the 2024 version! In some ways, my diagnosis and subsequent tests and checks were much easier than the treatment, particularly the surgeries. My first one was really tough with an 18 day stay and at times, I felt quite…

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27 Jun 2024

9 Comments

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, C‑Reactive Protein (CRP), Coeliac disease, Cognitive behavioural therapies (CBT), Constipation, Erythrocyte sedimentation rate (ESR), Gastroenterologist, Haemoglobin (hemoglobin), Hormones, IBS-C, IBS-D, IBS-M, Incomplete emptying, Irritable bowel syndrome (IBS), Metastatic Neuroendocrine Cancer, Misdiagnosis, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL)

Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…

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26 Jun 2024

3 Comments

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient AdvocacyDiet, Neuroendocrine neoplasm (NEN), Nutrition

Nothing in Neuroendocrine Cancer is ever black or white. One great example is diet and nutrition. I've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group. The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer". The answer is almost impossible because everyone is different - even generalisations can be way off for many causing unnecessary changes and/or worries. Here are a few of the reasons why these things can get muddled: 1. Not everyone has access to a NET…

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25 Jun 2024

2 Comments

Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, SurvivorshipCure, Full remission, No evidence of disease (NED), Partial remission, Stable cancer

This subject comes up a lot in patient groups. The heterogeneity of Neuroendocrine Neoplasms (a term for both well differentiated NET and poorly differentiated NEC) tends to be forgotten as people start to make blanket statements as if it applies to every single NET patient. It becomes a rather circular discussion where certain readers might even be unnecessarily misled about their outcome casually suggested by someone who knows nothing about their diagnostic and treatment history. Part of the problem is the official cancer terms built in the 1970s remain in use today, but they do not fit the vast changes…

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24 Jun 2024

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Low and High Residue Foods

Low and High Residue Foods

Diet and Nutrition, Patient AdvocacyBowel obstruction, Bowel surgery, Constipation, Diet, High Residue Diet, Low residue diet, Residue (food)

It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems. If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option. I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes…

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23 Jun 2024

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The trouble with the NET (Part 4) – Cancer can be fatal but so can fake cures

The trouble with the NET (Part 4) – Cancer can be fatal but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Alternative medicine, Alternative therapies

No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer. If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.I was also interested to read a number of articles about various aspects of this modern phenomenon. Firstly, in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual. Not just patients who get…

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22 Jun 2024

1 Comment

Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…

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21 Jun 2024

7 Comments

Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Chemotherapy, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Prognosis, Quality of LIfe (QoL), Remission, Somatostatin analogues

Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…

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20 Jun 2024

21 Comments

Somatostatin Receptors

Somatostatin Receptors

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Gamma camera, Hormones, Lanreotide, Octreotide, Octreotide scan, Pasireotide, Peptide receptor radionuclide therapy (PRRT), PRRT, Radiolabelled somatostatin analogue, SIGNIFOR® (Pasireotide), Somatostatin analogues, Somatostatin receptors (SSTR), Standardised uptake value (SUV), Yttrium 90 (Y90)

Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge. I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic! Somatostatin It's important to understand this hormone and…

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18 Jun 2024

17 Comments

Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, SurvivorshipCarcinoid tumour, Incurable cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question, but I believe there are times and places for it…

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17 Jun 2024

23 Comments

Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Ga68 PET/CT, Incurable cancer, Lanreotide, Low Grade NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Palliative care, Palliative treatment, Prognosis, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Terminal cancer

When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife…

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16 Jun 2024

11 Comments

Dear Doctors – There’s no such thing as a ‘good’ cancer!

Dear Doctors – There’s no such thing as a ‘good’ cancer!

AwarenessCarcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings. However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET). I can't remember much of the conversation but I vividly remember him indicating that of all the cancer issues out there to get, this was one of the better ones. He was using a meter analogy…

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14 Jun 2024

16 Comments

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

A spotlight on NENs - Syndromes, Awareness5-HIAA, Achlorhydria, Adrenocorticotropic Hormone (ACTH), Alcohol, Angioma, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Carney-Stratakis syndrome (CSS), Cerebellum, Cushing's disease, Cushing's syndrome, Dermatitis, Diet, Familial medullary thyroid cancer (FMTC), Fat malabsorption, Functional tumour, Gastrinoma, Glucagon, Glucagonoma, Haemangioblastoma, Hedinger syndrome, Hereditary pheochromocytoma/paraganglioma syndromes, Hypercalcemia, Hypercortisolism, Hypokalemia, Insulinoma, Medullary thyroid cancer (MTC), MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, NET syndromes, Neuroendocrine cancer, Non-functional tumour, Paraganglioma, Paraneoplastic syndromes, Pheochromocytoma, Pituitary gland, PPoma, SDHA, SDHAF2, SDHB, SDHC, Somatostatin analogues, Somatostatinoma, Surgery, Sweet's syndrome, The 5 E's, Verner-Morrison syndrome, VIPoma, Von Hippel-Lindau (VHL) Syndrome, Von Recklinghausen's disease, Wermer syndrome, Whipple's triad

There are some curious things about Neuroendocrine Cancer (NETs elsewhere in the text on the basis that a hormonal syndrome is extremely rare in Neuroendocrine Carcinoma (NEC)). One of them is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'. Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease". Having a syndrome can often be the difference between having a 'functional' condition or a non-functional' condition. This frequently makes NET …

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12 Jun 2024

4 Comments

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdrenaline, Amines, Ascending colon, Biogenic amines, Carcinoid crisis, Carcinoid syndrome, Catecholamines, Diet, Dopamine, Histamine, Hormones, Malabsorption, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Pressor amines, Probiotic, Quality of LIfe (QoL), Right hemicolectomy, Serotonin, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Surgery, Tryptophan, Tyramine, Vasoactive amines

Reviewed and updated 23rd January 2024 Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…

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11 Jun 2024

22 Comments

Neuroendocrine Cancer: My experience with Lanreotide Ipsen

Neuroendocrine Cancer: My experience with Lanreotide Ipsen

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Butt dart, Carcinoid syndrome, CLARINET, Diabetes, Flushing, Granulinoma, Hormones, Lanreotide, Lung NETs, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Octreotide, Octreotide scan, Peptide, Somatostatin analogues, Somatuline Autogel (US: depot), SPINET, Surgery

On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here. My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would…

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10 Jun 2024

2 Comments

Neuroendocrine Cancer: Make some noise for this silent cancer

Neuroendocrine Cancer: Make some noise for this silent cancer

AwarenessNeuroendocrine cancer

Reviewed and updated 9th June 2024One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer, its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people's interest. Unfortunately, many campaigns I see are outdated, based on flawed themes from the 1980s and as a consequence, awareness of…

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09 Jun 2024

32 Comments

Neuroendocrine Cancer Awareness – let’s move into the 21st century

Neuroendocrine Cancer Awareness – let’s move into the 21st century

AwarenessCancer causes, CT scan, NET Cancer Day, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Zebra

The build up to (so called) "NET Cancer Day" (sic) has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more adult, more likely be taken seriously and attract new audiences? p.s. even our day has a ridiculous name - "NET Cancer" decodes to "Neuroendocrine Tumour Cancer" which is quite ludicrous not only because of the grammar…

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06 Jun 2024

39 Comments

Ignore this post about Neuroendocrine Cancer

Ignore this post about Neuroendocrine Cancer

AwarenessCarcinoid heart disease, Diarrhea, Flushing, Hormones, IBS, Liver metastases, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Actually, you must share it widely, people out there will have this disease and need a diagnosis. People already out there with a diagnosis and want more awareness - so go on, ignore the post title and share it! When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's…

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05 Jun 2024

7 Comments

Not all cancers are black, white, blue, pink – some are very grey

Not all cancers are black, white, blue, pink – some are very grey

AwarenessNeuroendocrine cancer, Zebra

Some people appear to have a fascination with cancer colours. Nothing wrong with that until it turns into a cult overshadowing everything else. I saw the same issues coming out of bloggers of varying cancer types via my association with WEGO (now part of Health Union), particularly with Breast Cancer and their pink thing. On a similar subject, I've seen quite a few posts entitled "Not all Cancer is pink". I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is…

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04 Jun 2024

0 Comments

Try these 5 blog posts

Try these 5 blog posts

Patient AdvocacyNeuroendocrine 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…

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03 Jun 2024

8 Comments

Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine CancerCarcinoid syndrome, Hypothyroidism, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Thyroid

In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…

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02 Jun 2024

0 Comments

Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Inspiration, Patient Advocacy, SurvivorshipPancreatic cancer, Pancreatic NET (PanNET), Whipple procedure

Great story from Ryan who was diagnosed with stage IV Pancreatic NET in 2022. Ryan is a wrestler and a wrestler coach. He's therefore used to facing tough situations. His podcast sponsor has used some fine words which I will leave you to read. I see many patients facing up to these situatons on a day to day basis but I think it's great that Ryan is telling his story to help others. Ryan is married with 4 children, so, like many of my readers, he has a lot to live for. I wish him the very best as he…

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01 Jun 2024

0 Comments

A Review of May 2024 on RonnyAllan.NET

A Review of May 2024 on RonnyAllan.NET

Newsletters, Patient AdvocacyNeuroendocrine cancer

Here is the monthly summary of what we all achieved in May 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. Every share spreads awareness and you potentially save someone's life. 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 wish I could do more but there's just little old me! And Chris too of course for those following my exploits on…

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31 May 2024

0 Comments

NHS England’s new Cancer Vaccine Launch Pad

NHS England’s new Cancer Vaccine Launch Pad

Clinical Trials and Research, Patient Advocacy, TreatmentCancer vaccine, mNRA

Update August 2025. Patients in England with advanced head and neck cancer are being fast-tracked into a ground-breaking mRNA cancer vaccine trial, as the NHS expands its Cancer Vaccine Launch Pad (CVLP) to accelerate access to cutting-edge treatments. Update April 2025. Melanoma patients in England get fast-track access to cancer vaccineUpdate March 2025. The UK government announced their intention to abolish NHS England and bring it back under the Department for Health and Social Care (DHSC) (i.e. a merger). The change programme will take up to 2 years. In the meantime, the blog will be updated with new nomenclature when further information is…

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30 May 2024

0 Comments

A First-in-Human Phase I Trial With Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas

A First-in-Human Phase I Trial With Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas

Clinical Trials and ResearchAdrenocortical Carcinoma (ACC), Antibody drug conjugate, High grade neuroendocrine neoplasm (NEN), Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

What is the objective of this trial? To test a new drug, ADCT-701 (an Antibody-drug conjugate (ADC)), in people with Neuroendocrine Neoplasms (NENs). The eligibility extends to al adults aged 18 and older with NENs. It is listed in the NIH database under clinical trial identify number NCT06041516 (Reference 1 below). What are Antibody-drug conjugates (ADCs)? Antibody-drug conjugates (ADCs) are innovative biopharmaceutical products in which a monoclonal antibody is linked to a small molecule drug with a stable linker. Most of the ADCs developed so far are for treating cancer, but there is enormous potential for using ADCs to treat other…

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29 May 2024

7 Comments

I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment5-HIAA, Bradykinin, Broken capillaries, Calcitonin gene-related peptide (CGRP), Carcinoid syndrome, Carcinoid tumour, Estrogen, Flushing, Functional tumour, Gonadotropin-releasing hormone (GnRH), Histamine, Hormones, Hypokalemia, Luteinizing hormone (LH), Mastocytosis, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Noradrenaline, Nutrition, Octreotide, Pheochromocytoma, Prostaglandin, Quality of LIfe (QoL), Rosacea, Serotonin, Substance P, Surgery, Tachykinin, The 5 E's, VIPoma, Watery diarrhea

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…

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28 May 2024

22 Comments

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and NutritionAntibiotics, Carcinoid syndrome, Carcinoid tumour, Diarrhea, Diet, Dysbiosis, FODMAP, Gut, Gut Flora, Hydrogen breath test, Inflammatory bowel disease (IBD), Lactulose, Malabsorption, Midgut, Neuroendocrine, Neuroendocrine cancer, Nutrition, Probiotic, Proton pump inhibitors (PPI), Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Surgery

In this article, I'm discussing the use of probiotics to combat several issues including the general health of the 'gut' including IBS like symptoms, and the potential issue of small intestine bacterial overgrowth (SIBO), all of which may be related in some way to Neuroendocrine Tumours. That said, these issue may be regular conditions, nothing to do with NET. Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues. It is also a key factor in maintaining a decent quality of life and for most countries without…

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24 May 2024

4 Comments

The trouble with the NET (Part 3) – Miracle Cures

The trouble with the NET (Part 3) – Miracle Cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", SurvivorshipNeuroendocrine, Neuroendocrine cancer

Since I started blogging, I've had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence. There's a third factor and that is credibility - I'd like to think I've worked hard to earn that level of trust in my 'product'. I use the NET to talk about NETs! I'm a genuine guy with a genuine purpose and I don't want to sell you anything - my 'product' is free. However, the 'NET' can also provide 'misinformation'. Unfortunately 'misinformation' also includes…

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23 May 2024

20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentB12, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile acids, Bile salt, Carcinoid syndrome, Digestive enzymes, Endocrine, Fat malabsorption, Fat soluble vitamins, Gallbladder, Gut Flora, Hormones, Iron Deficiency Anaemia, Lanreotide, Liver, Malabsorption, Neuroendocrine, Neuroendocrine cancer, Nutrition, Octreotide, Pancreatic cancer, Pancreatic NET (PanNET), Pernicious anaemia, Probiotic, Quality of LIfe (QoL), Side effect, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Steatorrhea, Surgery, Vitamin ADEK, Vitamin B12, Water soluble vitamins

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…

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23 May 2024

29 Comments

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and NutritionAnorexia, Carcinoid syndrome, Fat soluble vitamins, Fatigue, Malabsorption, Mineral, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Nutrition, Vitamin A, Vitamin ADEK, Vitamin B complex, Vitamin B1, Vitamin B12, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Vitamin B7, Vitamin B9, Vitamin C, Vitamin D, Vitamin E, Vitamin K, Water soluble vitamins

Always speak to your specialist before taking vitamin and mineral supplements. Featuring Tara Whyand Vitamin deficiency is common in the general population so your issue may not be related to NET. But read on to learn the risks for NET patients. Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this…

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22 May 2024

4 Comments

Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

Survivorship, TreatmentBlood clot, CT scan, Desmoplasia, Multimodal treatment, Neuroendocrine, Neuroendocrine cancer, Post operative seroma, Pulmonary embolism, Quality of LIfe (QoL), Side effect, Surgery, White blood count (WBC)

I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue,…

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20 May 2024

4 Comments

Other people get cancer, not me

Other people get cancer, not me

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 speed'.…

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18 May 2024

30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

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

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

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17 May 2024

2 Comments

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, National Institute for Health and Care Excellence (NICE), Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Orginal post - 25th Nov 2014.The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of…

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16 May 2024

19 Comments

No Fear or Know Fear?

No Fear or Know Fear?

Inspiration, SurvivorshipAnxiety, Neuroendocrine cancer, Octreotide scan, Scanxiety, Surgery

Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all different. The article drew in a lot of non-NET people who were attracted by the original title. It did spread a little bit of awareness but I guess the dozens of bunjee jumpers and other dangerous sports types quickly left when they found out it wasn't about either the famous sports clothing shop or jumping off large structures with NO FEAR! The Original ArticleIt's that time again, every 6 months I need some checks. I've done…

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15 May 2024

7 Comments

Carcinoid Syndrome – chicken or egg?

Carcinoid Syndrome – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyCarcinoid syndrome, Carcinoid tumour, Chemotherapy, Cushing's syndrome, Gastrin, Glucagon, Insulin, Lanreotide, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pancreatic polypeptide (PP), Somatostatin, Vasoactive intestinal peptide (VIP), Zollinger-Ellison Syndrome

We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' but not one of associated 'Neuroendocrine Tumours' - my instinct says that is…

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14 May 2024

8 Comments

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment5-HT, Advanced neuroendocrine cancer, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Dermal fibrosis, Desmoplasia, Hedinger syndrome, Hormones, Hydrocele, Hydronephrosis, Intestinal ischaemia, Mesentery, Neuroendocrine cancer, Neuroendocrine tumour (NET), Peritoneal carcinomatosis, Pleural Fibrosis, Pulmonary fibrosis, Retroperitoneal Fibrosis, Retroperitoneum, Scleroderma, Serotonin, SI NET, Small intestine NET (SI NET)

What happened to me? Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area. It was identified on the very first CT scan which triggered my diagnosis. Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness". Followed by a statement saying that it was "almost certainly malignant". The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance". Interestingly the fibrosis itself does not appear…

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13 May 2024

8 Comments

Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAcid reflux, Carcinoid syndrome, Diabetes, Early Diagnosis, Endocrine, Hormones, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery, Symptom

A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…

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12 May 2024

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Neuroendocrine Cancer? – 10 questions to ask your doctor

Neuroendocrine Cancer? – 10 questions to ask your doctor

Patient AdvocacyGrade, Hereditary cancer syndrome, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Poorly differentiated, Stage, Well differentiated

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out…

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11 May 2024

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Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Diagnosis, Diarrhea, Flushing, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations),…

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08 May 2024

1 Comment

Do you suffer from NET Brain?

Do you suffer from NET Brain?

Awareness, Humour

A satirical look at the acronym or abbreviation "NET". I wrote this after I noticed many non-NET people reading my blogs. The acronym 'NET' (NeuroEndocrine Tumour) can be advantageous to NET advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by 'surfers'. NET just also happens to be a common truncation of the word 'Internet' or 'Network'. The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look. Bingo - we have spread a little bit of awareness! However, these unintended awareness…

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07 May 2024

16 Comments

“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Chemotherapy, Incurable cancer, Lymphedema, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Pulmonary embolism, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Well differentiated

If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'. I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy. If you read any newspaper article about…

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05 May 2024

27 Comments

Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentCarcinoid heart disease, Carcinoid syndrome, ECG, Echocardiogram, Heart disease, Hedinger syndrome, Hormones, Neuroendocrine, Neuroendocrine cancer, NT-proBNP, Patent foramen ovale (PFO), Quality of LIfe (QoL), Serotonin, SI NET, Small intestine NET (SI NET), Somatostatin analogues, Surgery

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…

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04 May 2024

3 Comments

“You’re from Dundee – you must like fighting”

“You’re from Dundee – you must like fighting”

Humour, InspirationAdvanced neuroendocrine cancer

Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight!Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner. However, I believe one of those attributes is accurate. I was once 'volunteered' for boxing because my home town was Dundee! Read on...Dundee was put on the boxing map in the late fifties/early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang…

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03 May 2024

27 Comments

I look well but you should see my insides

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentChemotherapy, Invisible illness, Lanreotide, Neuroendocrine cancer, Octreotide, Palliative treatment, Quality of LIfe (QoL), SI NET, Small intestine NET (SI NET), Somatostatin analogues, Surgery

I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away. I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as I do. Some have hats or bandanas partly disguising the loss of hair. I feel for them. No matter how many visits I make, I can't help feeling out of place in a Cancer ward. I'm…

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02 May 2024

10 Comments

Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

TreatmentAdjuvant surgery, Advanced neuroendocrine cancer, Carcinoid syndrome, Cytoreductive, Debulking surgery, Enucleation, Liver metastases, Neuroendocrine tumour (NET), Pancreatic NET (PanNET), SI NET, Small intestine NET (SI NET), Somatostatin analogues

May 2024. a refurbish from some of my early work in 2015. I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…

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01 May 2024

0 Comments

A Review of April 2024 on RonnyAllan.NET

A Review of April 2024 on RonnyAllan.NET

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of what we all achieved in April 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. Every share spreads awareness and you potentially save someone's life. 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 wish I could do more but there's just little old me! And Chris too of course for those following my exploits on…

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