Survivorship Archives

21 Jul 2024

9 Comments

Neuroendocrine Cancer: The Perfect Storm

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

The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UK As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's…

14 Jul 2024

By Ronny Allan

3 Comments

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid tumour, Chronic condition, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defence it was…

13 Jul 2024

By Ronny Allan

5 Comments

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdhesions, Advanced neuroendocrine cancer, Bowel obstruction, Carcinoid tumour, Colonoscopy, Diverticulitis, Incurable cancer, Lactulose, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery

OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…

11 Jul 2024

By Ronny Allan

22 Comments

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, BAM, Bowel obstruction, Clexane, Constipation, Diarrhea, Diet, Fibre, IBS, Irritable bowel syndrome (IBS), Lanreotide, Malabsorption, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Surgery, Vitamin ADEK, Vitamin B12, Vitamin D, Water soluble vitamins

In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…

07 Jul 2024

By Ronny Allan

7 Comments

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipBowel obstruction, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Inflammatory bowel disease (IBD), Loperamide hydrochloride, Quality of LIfe (QoL), Stomach cramp, Surgery

Early in my journey, I was in a public toilet, the sign said "Please flush after use". I tried my hardest but my face would not turn red. I then clicked what the sign meant! OK, that did not happen but it does make for a good intro to the blog title. Over the years, I've read so many stories and answered so many questions about the quite natural act of using a toilet (.....some more repeatable than others). I think if there were a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest, clearly,…

05 Jul 2024

By Ronny Allan

19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, BAM, Bile acid malabsorption, Bile acid sequestrant, Bile salt, Carcinoid syndrome, Chemotherapy, Constipation, Creon, Diet, Differential diagnosis, Flushing, Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, IBS, Imodium, Incurable cancer, Lanreotide, Loperamide hydrochloride, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Pancreatic enzyme replacement therapy (PERT), PPoma, Quality of LIfe (QoL), Radiotherapy, Serotonin, Somatostatin analogues, Somatostatinoma, Steatorrhea, Supplements, Surgery, Telotristat ethyl (Xermelo), Terminal ileum, Tryptophan hydroxylase (TPH), VIPoma

Reviewed and updated 5th July 2024 Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma, PPoma. Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load. There are other reasons that might be causing or contributing, including (but not…

30 Jun 2024

By Ronny Allan

0 Comments

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…

27 Jun 2024

By Ronny Allan

9 Comments

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…

25 Jun 2024

By Ronny Allan

2 Comments

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…

21 Jun 2024

By Ronny Allan

7 Comments

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…

18 Jun 2024

By Ronny Allan

17 Comments

Let’s talk about living with NETs

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

Opinion. Over the years, I've seen questions 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 and that a…

17 Jun 2024

By Ronny Allan

23 Comments

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…

12 Jun 2024

By Ronny Allan

4 Comments

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…

11 Jun 2024

By Ronny Allan

22 Comments

Neuroendocrine Cancer: My 15 year 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 12th May 2026. I received injection number 200! Click here to read more. 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…

02 Jun 2024

By Ronny Allan

0 Comments

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…

24 May 2024

By Ronny Allan

4 Comments

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…

23 May 2024

By Ronny Allan

20 Comments

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…

22 May 2024

By Ronny Allan

4 Comments

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,…

16 May 2024

By Ronny Allan

19 Comments

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…

13 May 2024

By Ronny Allan

8 Comments

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…

07 May 2024

By Ronny Allan

16 Comments

“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…

05 May 2024

By Ronny Allan

27 Comments

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…

03 May 2024

By Ronny Allan

27 Comments

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

Note: This text is based on my experience in 2015/2016 when I had my injections given at a chemotherapy ward in my local hospital. I have now been receiving them at home since 2017. Original blog follows: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…

30 Apr 2024

By Ronny Allan

17 Comments

I’m only as good as my last scan

Living with Neuroendocrine Cancer, SurvivorshipCancer grading, Cancer staging, Cancer surveillance, Carcinoid tumour, CT scan, Ga68 PET/CT, Magnetic resonance imaging (MRI) scan, Metastatic Neuroendocrine Cancer, NETSPOT, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL), Scan, Scanxiety

"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say and it emphasises the importance of scans in advanced metastatic cases or those early in their diagnosis. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would…

26 Apr 2024

By Ronny Allan

11 Comments

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", SurvivorshipAlternative medicine, Alternative therapies, Carcinoid syndrome, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Quality of LIfe (QoL)

“But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a light-hearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer. They also post them on social media increasing…

19 Apr 2024

By Ronny Allan

10 Comments

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, SurvivorshipCarcinoid syndrome, Invisible illness, Quality of LIfe (QoL), Stomach cramp

In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border. It was a fantastic experience, and we met some really interesting people on our 6-day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet. I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people…

15 Apr 2024

By Ronny Allan

8 Comments

Surgery – the gift that keeps on giving

Survivorship, TreatmentCarcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Debulking surgery, Hotspot, Liver metastases, Right hemicolectomy, SI NET, Small intestine NET (SI NET), Surgery, Vascular

I first wrote this article in December 2014. My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage. Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…

14 Apr 2024

By Ronny Allan

0 Comments

Piss off cancer, it’s 13 years since my liver surgery!

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer survivor, Laparoscopic surgery, Liver metastases, Small intestine NET (SI NET), Surgery

I'm still here I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have…

01 Apr 2024

By Ronny Allan

0 Comments

A Review of March 2024 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer

I'm thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing both!). I really am very grateful. You know who you are - take a bow! Here is my monthly summary of what we all achieved in March 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…

29 Mar 2024

By Ronny Allan

1 Comment

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentDiagnosis, Distant metastatis, Intermediate grade NET, Liver embolization, Low Grade NETs, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Octreotide, Octreotide scan, Small intestine NET (SI NET), Surgery

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…

20 Mar 2024

By Ronny Allan

23 Comments

The trouble with the NET (Part 1) – Cancer Myths

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", SurvivorshipAlternative medicine, Alternative therapies, Cancer causes, Neuroendocrine cancer

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 can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media…

19 Mar 2024

By Ronny Allan

2 Comments

So what next?

Inspiration, Survivorship, Travel with RonnyAdvanced neuroendocrine cancer, Survivor

See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint! Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet. That's not…

04 Mar 2024

By Ronny Allan

0 Comments

Living with Cancer? Take a break if you need one

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer related fatigue, Depression, Incurable cancer

It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some…

12 Feb 2024

By Ronny Allan

0 Comments

Lower grade higher stage NETs – slow motion, chronic and indolent?

Awareness, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Stage, Well differentiated

ContextI write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math). That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…

01 Feb 2024

By Ronny Allan

4 Comments

Things not to say to someone with cancer

Inspiration, SurvivorshipCancer, Cancer survivor, Invisible illness

This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere! Personally, I don't tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never…

25 Jan 2024

By Ronny Allan

28 Comments

Scanxiety – I just don’t get it!

Inspiration, SurvivorshipNeuroendocrine cancer, Quality of LIfe (QoL), Scan, Scanxiety

OPINION ...... but read the post before you form your own based on the post title The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting…

02 Jan 2024

By Ronny Allan

0 Comments

Me and the other big C December 2023

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, COVID-19, Ground glass opacities

When covid-19 first hit the scenes early 2020, it was a bit of a shock, a bit of a worry, but most people (including yours truly) thought it would be over in a few months. So it was a bit of a shock when I tested positive in Dec 2023 shortly after getting back from a trip to London. Strangely, Chris was not affected. After I tested positive, we effectively isolated each other and took precautions.Back in 2020. we both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote…

02 Dec 2023

By Ronny Allan

15 Comments

Opinion: Let’s attack Cancer metaphors

Patient Advocacy, SurvivorshipCancer

Since I started blogging, I've read dozens of articles on the subject of 'cancer metaphors' and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms. The authors say that perhaps this is not the best language to use. One author used the term 'violence' to describe these type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don't like Cancer - it attacked me, it attacked…

10 Nov 2023

By Ronny Allan

10 Comments

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Biopsy, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Hormones, Neuroendocrine cancer, Octreotide, Octreotide soak, Somatostatin analogues, Surgery

1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 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 pinned down by the dozen or so tubes going in and out of my weak and battered body. …

06 Nov 2023

By Ronny Allan

5 Comments

Neuroendocrine Cancer: Make time for your wellness

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

I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during cancer:You could try to surround yourself with positive people and positive energy. Seek support from your friends, family, or a support group who can listen to you, encourage you, and even make you laugh. You can also read inspirational books, listen to uplifting music, or…

24 Oct 2023

By Ronny Allan

0 Comments

No flushes please!

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Flushing

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…

17 Oct 2023

By Ronny Allan

4 Comments

Blogging is a full-time job – and I walked right into it!

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipNeuroendocrine cancer

My very first blog post - 'remastered' in 2023!The original post as I published it on 29 Apr 2014This is a new skill so bear with me, please! The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris.The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway.The walk is for two purposes:1. To raise awareness of Neuroendocrine Cancer2. To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours).As a lead-up to the actual walk itself, I'll…

12 Oct 2023

By Ronny Allan

10 Comments

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Inspiration, SurvivorshipLanreotide, NHS, Surgery

I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should've seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'. That nurse was professional, thorough and she clearly went the extra mile…

11 Oct 2023

By Ronny Allan

3 Comments

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, SurvivorshipCarcinoid syndrome, Carcinoid tumour, Flushing, Metastatic Neuroendocrine Cancer, Probiotic, Quality of LIfe (QoL), Somatostatin analogues, Stomach cramp

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'. Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......). This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able! As a Cancer patient, there were some issues…

09 Oct 2023

By Ronny Allan

7 Comments

Neuroendocrine Cancer: Troublesome Thyroids (Updated 2026 Edition)

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentAnaplastic, Axillary nodes, Calcitonin, Calcium, Core Biopsy, Familial medullary thyroid cancer (FMTC), Fine needle aspiration (FNA), Follicular cell, Ga68 PET/CT, Graves’ disease, Hashimoto's disease, Hurthle cell neoplasm, Hyperthryroidism, Hypothyroidism, Levothyroxine, Medullary thyroid cancer (MTC), MEN1 syndrome, Multiple Endocrine Neoplasia (MEN), Overactive thyroid, Papillary thyroid cancer, Parathyroid gland, SCF node, Supraclavicularfossa, Thyroid, Thyroid cancer, Thyroid stimulating hormone (TSH), Thyroxine (T4), Triiodothyronine (T3), Underactive thyroid

Thyroid information disclaimerThis content is for general education and reassurance only. It is not a substitute for personalised medical advice, diagnosis, or treatment. Thyroid nodules, thyroid function tests, cytology categories (Bethesda/THY), and molecular tests (such as ThyroSeq, Afirma, or ThyroidPrint) all require interpretation by qualified clinicians who know your full medical history, imaging, pathology, and symptoms. Thyroid disease is common and highly individual. Most nodules are benign, and many thyroid abnormalities are incidental findings — especially in people who undergo frequent imaging. Decisions about biopsy, molecular testing, surgery, or surveillance should always be made with your endocrinologist, surgeon, or multidisciplinary…

08 Oct 2023

By Ronny Allan

0 Comments

Another dartboard event, another first

Patient Advocacy, SurvivorshipCOVID-19, Flu, Vaccine

On 7th October 2023, another dartboard event, another first. I think I've lost count of my Covid 19 and Flu vaccinations, particularly the latter which has been going on for 20+ years. But this year was the first time I received both vaccinations at the same time. This is known in healthcare circles as 'coadministration' and is widespread practice. Both references below (UK and US) confirm this strategy. Coadministration of Covid-19 and Flu is new on the basis that Covid-19 is relatively new. Clearly a sign of the times but from what I've read and studied, it's safe and effective…

07 Oct 2023

By Ronny Allan

3 Comments

Shrek and Princess Fiona

Humour, Inspiration, SurvivorshipCancer survivor

I was looking through some old photographs and came across this one I thought you guys might like. It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time. This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex…

05 Oct 2023

By Ronny Allan

2 Comments

Dr Google will see you now

Patient Advocacy, SurvivorshipAnxiety, Cyberchondria, Doctor Google (Dr. Google), Misdiagnosis, Neuroendocrine cancer, Symptom

Edited 7th May 2026. Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me! I even dabble in artificial intelligence (AI) (but I tread carefully on both). However, you need to be very careful in acceptance of what is credible information and what isn't. As I had worked in IT since the 1980s, plus being a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches,…

04 Oct 2023

By Ronny Allan

7 Comments

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with RonnyNeuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…

05 Sep 2023

By Ronny Allan

10 Comments

Update from Ronny Allan: No evidence of progressive disease at any site

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipDiet, Malabsorption, Neuroendocrine cancer, Nutrition, Probiotic, Quality of LIfe (QoL), Side effect, Supplements, Surgery

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing…

Category: Survivorship