Patient Advocacy Archives

19 Jun 2025

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Good morning from Ronny Allan

Patient Advocacy

Ronny Allan here. Apologies for intruding on your day but I'm reorganising how my blogs and newsletters are sent from my website. This is just a bit of a test! But if you have some time, you could try a browse of my site RonnyAllan.NET to see what you may have missed!

11 Jun 2025

By Ronny Allan

0 Comments

Don’t delay your blood tests – it’s not good for your health!

Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Diarrhea, Flushing, Small intestine NET (SI NET)

15 years today, and before I was formerly diagnosed, I had a blood test done. And it was a fairly insignificant event, as a precaution, as a "just in case" check after telling a nurse in my GP surgery that I thought I'd lost some weight. The form she gave me sat in my in-tray for a couple of weeks, I was far too busy at work for blood tests. I didn't even feel ill! Fortunately, I did eventually get the test done on 11th June 2010 and and here we are today! Check out the video where I talk…

30 May 2025

By Ronny Allan

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Ronny Allan’s Top 10 so far in 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I am here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…

04 May 2025

By Ronny Allan

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Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/05/01/ronny-allan-a-review-of-my-blog-activity-april-2025/ https://ronnyallan.net/2025/04/28/the-6-es/ https://ronnyallan.net/2025/04/26/repeat-after-me-make-time-for-your-wellness/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Exciting mail! Page World…

01 May 2025

By Ronny Allan

0 Comments

Ronny Allan – a review of my blog activity April 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of April 2025 on RonnyAllan.NETEvery share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by many personal things in April 2025, (including a 2 week overseas holiday)…

28 Apr 2025

By Ronny Allan

1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Anxiety, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Diet, Flushing, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues

An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…

26 Apr 2025

By Ronny Allan

1 Comment

Repeat after me: Make time for your wellness

Inspiration, Patient Advocacy, SurvivorshipAnxiety, Cancer survivor

Following a diagnosis of metastatic Neuroendocrine Cancer in 2010, I had no idea about outcomes. Back, then I was focused on getting my illness fixed or patched up. That took a few years and several procedures including 3 surgeries, plus a ton of drugs including a monthly injection. Apart from recuperation periods following those procedures, I pretty much worked as normal as possible throughout that 3 years, I thought that was part of my healing, mental and physical. I didn't really holiday a lot, perhaps in hindsight, that was a foolish omission. Finally, when I broke out of my illness…

26 Apr 2025

By Ronny Allan

6 Comments

Catch up on Ronny Allan’s Blog

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, TreatmentNeuroendocrine cancer

You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days. Click on anything that takes your fancy. Many thanks. To read any article, just click on the title/picture below Latest from Instagram https://www.instagram.com/neuroendocrine.cancer.ronny/ Select of category of posts you'd like to see 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…

05 Apr 2025

By Ronny Allan

3 Comments

The trouble with the NET (Part 5) – Cancer Diet Myths

Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Alternative medicine, Blood glucose, Cancer causes, Diet, Essiac therapy (Essiac tea), Gerson therapy, Glucose (cancer sugar myth), Green tea, Ketogenic diet, Laetrile (amygdalin or vitamin B17), Mushrooms, Neuroendocrine cancer

Updated 29th June 2025...... Keep reading. 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. Even food and nutritional supplements fall into this area. Be cautious about believing information about, or paying for, any alternative cancer therapy on the internet. Common dietary myths (this is not a complete list!) There are numerous (alleged)…

31 Mar 2025

By Ronny Allan

0 Comments

A review of March 2025 on RonnyAllan.NET

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of March 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. I'm thankful for every view because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…

23 Mar 2025

By Ronny Allan

8 Comments

Living with Cancer: Don’t cross the bridge until you get to it

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

It's normal to be worried when you read something online including a scan report which has words that frighten you, when you notice a slightly high blood test. Or if read something bad about one type of NET or what has happened to someone with a different type of NET as you; and you think this might also apply to you. But too much worrying about something which is more likely to not be a problem or will almost certainly not happen to you; is not a good place to be. Don't cross the bridge until you come to it,…

22 Mar 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Functional vs Non-functional

A spotlight on NENs - Syndromes, Patient Advocacy, Spotlight on NENs - Types SeriesCarcinoid syndrome, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Functional tumour, Gastrinoma, Glucagonoma, Insulinoma, NET syndromes, Non-functional tumour, Somatostatinoma, VIPoma

The terms functional and non-functional come up a lot in documents describing Neuroendocrine Cancer. They also feature highly in patient groups. But what do these terms actually mean? Functional / Non-FunctionalNeuroendocrine Tumours are treatable for most but the difficult part can be arriving at a diagnosis. Moreover, some Neuroendocrine Tumours (NETs) can be silently growing and as they grow slowly, the 'silence' can go on for some years. Even with a syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses. There can be the odd exception but in general terms, NETs are either functional (with…

17 Mar 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: 10 posts not to miss

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition and have a public profile, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I'm here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms. Liking every post and sharing, also…

15 Mar 2025

By Ronny Allan

29 Comments

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAcid reflux, Advanced neuroendocrine cancer, Amylase, Antiacids, Barrett's Esophagus, Bile acid malabsorption, Bile acid sequestrant, Carcinoid syndrome, Carcinoid tumour, Cholestyramine, Exocrine function (pancreas), Exocrine pancreatic insufficiency, Fecal elastase test, Fecal fat, H2 receptor antagonist (H2RA), Hormones, Lanreotide, Lipase, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Nutrizym, Octreotide, Pancrease, Pancreatic cancer, Pancreatic insufficiency, Pancreatic NET (PanNET), Pancreatin, Pancrex, Pepcid (Famotidine), Protease, Proton pump inhibitors (PPI), Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Somatostatin analogues, Steatorrhea, Surgery, Total gastrectomy, Total pancreatectomy, Zantac, Zollinger-Ellison Syndrome

After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…

13 Mar 2025

By Ronny Allan

4 Comments

Histotripsy – the case for use in UK as Histosonics was awarded early market access

Clinical Trials and Research, Patient Advocacy, TreatmentAblation, Advanced neuroendocrine cancer, Histotripsy, Liver directed therapy

Hot off the press - 10 Mar 2026 Wellington Hospital London is now the first independent hospital in Europe to offer Histotripsy. Clearly treatment at this hospital will need to be funded by the individual or covered by a private healthcare insurance policy.Click here to read more. Hot off the press - 22 Oct 2025 Cambridge treats first NHS cancer patient A Cambridge patient has become the first person in Europe to receive cutting-edge histotripsy treatment outside of a clinical trial, after the technology was fast-tracked by the Government - marking a major milestone in NHS cancer care. Addenbrooke’s is…

11 Mar 2025

By Ronny Allan

4 Comments

Early diagnosis of late stage cancer

Patient AdvocacyAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Diarrhea, Flushing, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

Early diagnosis of late stage cancer What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here. "The cancer has been growing for years" One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in…

08 Mar 2025

By Ronny Allan

0 Comments

Small intestine, large surgery

Patient Advocacy, TreatmentDebulking surgery, Desmoplasia, Duodenum, Incurable cancer, SB NET, SI NET, Small intestine NET (SI NET)

Edited and reviewed 4th September 2024 My own experience At my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi-disciplinary team was set up, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out…

06 Mar 2025

By Ronny Allan

1 Comment

Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Survivorship

Health Union accredits Ronny Allan This was announced in summer 2023 but it took me a while to engage due to my many commitments (including some big personal stuff to sort out) I had a false start, many things took priority for a while but early 2025, I was encouraged to complete it and finally crossed the line in February 2025. Read my Facebook announcement of certification - click here. My formal certificate was recently received, see below! Health Union Acquires WEGO Health - WEGO Health WEGO Health had the largest network of patient leaders in the world, clearly…

02 Mar 2025

By Ronny Allan

0 Comments

A Review of February 2025 from Ronny Allan

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of February 2025 on RonnyAllan.NET The headline is my award of accredited Patient Leader with Health Union, who I have had a long association with since the days of WEGO Health who they merged with a few years ago. Not sure how I finally found the time to complete after scratching at the surface of the task for 18 months! Someone gave me a deadline - that made a difference! The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of…

26 Feb 2025

By Ronny Allan

0 Comments

Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

A spotlight on NENs, Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Blue Book, Carcinoid syndrome, Carcinoid tumour, Cushing's syndrome, Diagnosis, Ectopic Cushing’s syndrome (ECS), Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Glucagonoma, Hormones, Incurable cancer, Insulinoma, Metastatic Neuroendocrine Cancer, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Somatostatinoma, VIPoma

The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…

20 Feb 2025

By Ronny Allan

0 Comments

Abseil for NETs – in memory of Heidi and Gary Veacock

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

Such Sad news. I was totally shocked to hear some heart-breaking news late on 5th February 2026. I had been online friends with Gary Veacock, a recently retired Lt Col in the Royal Marines. As a veteran, the comradeship was instant. Initially he would ask questions about NET and my experience. I guess he was keen to hear about others experiencing the same condition as his wife Heidi. Later on, I helped him fundraise for Heidi via a Royal Marines sponsored abseil organised by Gary with all proceeds going to Royal Free London, one of the top NET centres of…

17 Feb 2025

By Ronny Allan

7 Comments

The NETest® – can it replace Chromogranin A and more?

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid tumour, Chromogranin A (CgA), Liquid biopsy, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Tumour marker

See Summary below for a quick updateUpdate 8th Dec 2025. New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% Specificity: 85% Positive predictive value: 95% Negative predictive value: 82% Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages Identification of minimal residual disease, recurrence, and progression Monitoring and prediction of therapeutic response, including 177Lu-PRRT Prognostic value for progression-free and overall survival Detection of neuroendocrine differentiation in select epithelial tumors Click…

17 Feb 2025

By Ronny Allan

0 Comments

Ronny’s weekly update – 10th – 16th Feb 2025

Patient AdvocacyAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/02/14/ronny-allans-ponetry-an-ode-to-lanreotide/ https://ronnyallan.net/2025/02/16/dont-believe-the-hype-neuroendocrine-cancer-myths-debunked/ https://ronnyallan.net/2025/02/15/genetics-and-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/09/ronnys-weekly-update-3rd-9th-feb-2025/ https://ronnyallan.net/2025/02/14/no-one-is-ever-alone-on-ronnyallan-net/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Surprised to see this at…

16 Feb 2025

By Ronny Allan

2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, CT scan, Diarrhea, Everolimus, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreoscan (Octreotide scan), Octreotide, Pancreatic cancer, Pseudomyxoma peritonei (PMP), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surgery, Terminal cancer

Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue. They are a heterogeneous group of tumours. Read more…

14 Feb 2025

By Ronny Allan

1 Comment

No-one is ever alone on RonnyAllan.NET

Patient Advocacy, SurvivorshipSurvivorship

On February 14th, I'm so lucky to have Chris to celebrate Valentine's day. I know some people live alone and for some that is their choice. But I also know some don't have that choice, perhaps they are a NET patient who lost their partner, or a partner who lost their loved one to NET. My heart goes out to those today. I have a private group where people can ask questions about NET which is open 24/7 365 days per year. No-one is ever alone in this group. I may be sleeping if you contact me on my public…

12 Feb 2025

By Ronny Allan

0 Comments

5 posts not to miss on Ronny Allan’s blog

Patient AdvocacyNeuroendocrine cancer

Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I am here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…

09 Feb 2025

By Ronny Allan

0 Comments

Ronny’s weekly update – 3rd – 9th Feb 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Republished Blog Posts this week It's been an unforgettable week. In addition to the challenges of day to day living including any responsibilities beyond where I live, I seem to have crammed quite a lot in. Monday was mainly supporting others outside the NET community. At the other end of the spectrum, Tuesday was a quick trip to London to take part in Macmillan's World Cancer Day. As a Macmillan Cancer Voice, I was treated to a discussion between the UK Government's Health Minister (Wes Streeting) and well known BBC political commentator Nick Robinson. I didn't get a…

05 Feb 2025

By Ronny Allan

8 Comments

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Scanxiety, Stress

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…

03 Feb 2025

By Ronny Allan

1 Comment

4th February – World Cancer Day 2026 – Cancer turned my life upside down

Inspiration, Patient AdvocacyNeuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

What is World Cancer Day? World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda. Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries…

03 Feb 2025

By Ronny Allan

0 Comments

Ronny’s weekly update – 27th Jan – 02 Feb 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/27/ronnys-weekly-update-20-26-january-2025/ https://ronnyallan.net/2025/01/28/neuroendocrine-cancer-not-all-answers-are-black-and-white/ https://ronnyallan.net/2025/01/29/expanding-prrt-trial-of-177lu-edotreotide-solucin-compete-trial/ https://ronnyallan.net/2025/02/01/a-review-of-january-2025-from-ronny-allan/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group I guess you like my…

03 Feb 2025

By Ronny Allan

0 Comments

If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

Patient AdvocacyHeterogeneity, Heterogeneous

If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”. "Heterogeneous" means consisting of dissimilar parts or elements, essentially meaning "mixed" or "diverse," but I used the term "heterogeneity" to refer to the quality or state of being heterogeneous, meaning the presence of diverse components within a group or system; both terms indicate a lack of uniformity or consistency. You will note I used the term Neuroendocrine Neoplasms here - that is in line with formal naming conventional per agreed International Agency for Research on Cancer (IARC) terms. It…

01 Feb 2025

By Ronny Allan

0 Comments

A review of January 2025 from Ronny Allan

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Travel with Ronny

Here is the monthly summary of January 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…

28 Jan 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Not all answers are black and white

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect SeriesNeuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group - these are normally always directed at the entire group but often I'm tagged in, a giant hint that I'm expected to reply. I don't mind too much but my answer is generally the same whichever scenario. Where I'm not tagged, I'm still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but…

27 Jan 2025

By Ronny Allan

0 Comments

Ronny’s weekly update 20-26 January 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine tumour (NET)

New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group an oldie but…

26 Jan 2025

By Ronny Allan

5 Comments

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Thousands of people are diagnosed with cancer every day. Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services. Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…

22 Jan 2025

By Ronny Allan

7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Curative surgery, Cytoreductive, Debulking surgery, Desmoplasia, Do no harm, Incurable cancer, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Pancreatic pseudocyst, pNET, Prognosis, Quality of LIfe (QoL), Small intestine NET (SI NET), Surgery, Tumor board

Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…

18 Jan 2025

By Ronny Allan

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Ronny Allan – Every picture tells a story

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Afinitor, Anxiety, Biopsy, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Surgery

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, 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),…

16 Jan 2025

By Ronny Allan

3 Comments

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy5-HIAA, Carcinoid syndrome, Complete blood count (CBC), CT scan, Diarrhea, Doctor Google (Dr. Google), Endoscopic ultrasound (EUS), Flushing, Full blood count (FBC), Ga68 PET/CT, Hormones, Incurable cancer, Magnetic resonance imaging (MRI) scan, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide scan

Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…

10 Jan 2025

By Ronny Allan

7 Comments

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

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

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

06 Jan 2025

By Ronny Allan

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Neuroendocrine Cancer: Watch and wait or watch and worry?

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

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

01 Jan 2025

By Ronny Allan

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A review of 2024 from Ronny Allan

Patient AdvocacyAdvanced neuroendocrine cancer, Hives, Urticaria

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

30 Dec 2024

By Ronny Allan

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A review of December 2024 from Ronny Allan

Patient AdvocacyAdvanced neuroendocrine cancer

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

24 Dec 2024

By Ronny Allan

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A Christmas 2024 message from Ronny

Patient AdvocacyAdvanced neuroendocrine cancer, Survivorship

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

09 Dec 2024

By Ronny Allan

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Lanreotide – 15 more years

Patient Advocacy, TreatmentLanreotide

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

03 Dec 2024

By Ronny Allan

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

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

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

01 Dec 2024

By Ronny Allan

23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

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

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

29 Nov 2024

By Ronny Allan

7 Comments

It’s scary searching Cancer online

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

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

26 Nov 2024

By Ronny Allan

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18 days in November 2010 – by Ronny Allan

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

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

24 Nov 2024

By Ronny Allan

29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, ENETS, Hormones, Immunotherapy, Incurable cancer, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, PRRT, Quality of LIfe (QoL), SEER, Somatostatin analogues, Surgery

Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…

12 Nov 2024

By Ronny Allan

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Living with Neuroendocrine Tumours – the 14 year itch

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

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

Category: Patient Advocacy