Neuroendocrine tumour (NET) Archives

02 May 2017

4 Comments

NETwork with Ronny © – Newsletter April 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST. This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award. It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course). If you missed it, you can listen to it by clicking…

01 Apr 2017

By Ronny Allan

1 Comment

NETwork with Ronny © – Newsletter March 2017

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona. I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time. Some of them have been great supporters since the inception of my blog and community. March was a slower month in blogging terms due to…

01 Mar 2017

By Ronny Allan

9 Comments

NETwork with Ronny © – Newsletter February 2017

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Surgery, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥ January's success…

27 Feb 2017

By Ronny Allan

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

21 Feb 2017

By Ronny Allan

0 Comments

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Cisplatin/Etoposide, CLARINET, Everolimus, Food and Drug Administration, Ga68 PET/CT, Ga68-DOTATATE, Gastrointestinal NET (GI-NET), High grade neuroendocrine tumour (NET), Immunotherapy, Lanreotide, Liver directed therapy, Lu-177, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, Midgut, NETSPOT, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Octreotide scan, Pathology, Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, PRRT, RADIANT, Somatostatin analogues, Sunitinib (Sutent)

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…

01 Feb 2017

By Ronny Allan

6 Comments

NETwork with Ronny © – Newsletter January 2017

NewslettersCarcinoid crisis, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT

Hi NETworkers! Welcome to my third 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). January was a month for breaking records. I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they're broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer. Thank you all so much ♥ January was also a month for making new friends after being invited to speak to an…

27 Jan 2017

By Ronny Allan

2 Comments

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Biopsy, Bronchoscopy, Camera pill, Capsule endoscopy, Carcinoid crisis, Carcinoid tumour, CLO test, Colonoscopy, Endoscopic retrograde cholangiopancreatography (ERCP), Endoscopic ultrasound (EUS), Endoscopy, Gastroscopy, Helicobacter pylori, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Sigmoidoscopy, Surgery

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy…

18 Jan 2017

By Ronny Allan

5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Edotreotide, Ga68 PET/CT, Indium 111-pentetreotide, Lutathera, Metastatic Neuroendocrine Cancer, NETSPOT, NETTER-1, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nuclear medicine, Octreoscan (Octreotide scan), Octreotide, Pancreatic NET (PanNET), Paraganglioma, Pentetreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radionuclide, Satoreotide (Lutetium-177), SomaKit TOC

Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…

04 Jan 2017

By Ronny Allan

4 Comments

Does your body now have an extra organ? The MESENTERY

Living with Neuroendocrine CancerDesmoplasia, Mesenteric root, Mesentery, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Serotonin, Small intestine NET (SI NET), Superior mesenteric artery, Superior mesenteric vein

One of the very first words I heard at diagnosis was the word "Mesentery". In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area…

01 Jan 2017

By Ronny Allan

3 Comments

NETwork with Ronny © – Newsletter December 2016

NewslettersCarcinoid crisis, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pheochromocytoma, PRRT, Somatostatin analogues

Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month. For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards. This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category. The community award was special because it means we all won the award as…

18 Dec 2016

By Ronny Allan

6 Comments

Keep your lights burning

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

I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday. And 'Bravado' is not only acceptable, it's mandatory! A week later,…

14 Dec 2016

By Ronny Allan

4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, 24-hour urinary catacholamines and metanephrines, Adrenal glands, Adrenal medulla, Adrenaline, Adrenocortical Carcinoma (ACC), Anxiety, AZEDRA, Catecholamines, EPAS1, Epinephrine, Familial NET, FH, Ga68 PET/CT, Genetics, Hormonal crisis, Hormones, Hyperadrenergic, Hypertension, Intraoperative hypertensive crisis, Iobenguane I 131, MDH2, MEN2 syndrome, MIBG scan, Multiple Endocrine Neoplasia (MEN), Nausea, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), NF1, Octreotide scan, Palpitation, Pheochromocytoma, RET, Scan, SDHA, SDHAF2(SDH5), SDHB, SDHC, SDHD, Somatostatin analogues, Surgery, Sweating, Tachycardia, The 5 E's, Vanillylmandelic acid (VMA), Von Hippel-Lindau (VHL) Syndrome

Updated 19th August 2025 I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge. So, let's get definitions out…

06 Dec 2016

By Ronny Allan

8 Comments

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Inspiration, Patient AdvocacyNeuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output. Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for…

02 Dec 2016

By Ronny Allan

3 Comments

NETwork with Ronny © – Newsletter November 2016

NewslettersLung NETs, Lutathera, NET Cancer Day, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT

Hi, welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!). What a month November has been - we had NET Cancer Day build up and I've been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms. Due to increased activity, I recorded the second highest monthly viewing figures ever - over 13,000 hits on my blog site in…

26 Oct 2016

By Ronny Allan

7 Comments

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipLanreotide, Metastatic Neuroendocrine Cancer, NET Cancer Day, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched in 2016 and is very aptly named 'Living with NETs'. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the 'EyeforPharma' Patients Summit event in London on…

19 Sep 2016

By Ronny Allan

5 Comments

“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipChronic condition, Complex regional pain syndrome (CRPS), Invisible illness, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET)

I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others? I like to look for the positive things these well-meaning messages can convey. Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell? If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides". Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few…

24 Jun 2016

By Ronny Allan

14 Comments

What you don’t know might kill you

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…

04 Apr 2016

By Ronny Allan

3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials and Research, Living with Neuroendocrine CancerAcromegaly, Adrenocorticotropic Hormone (ACTH), Bynfezia Pen, COR-003, COR-005, Cortisol, CRN01941, Cushing's disease, Cushing's syndrome, DP1038, Everolimus, Flushing, Generic drugs, Growth hormone (GH), Hypercortisolism, Insulin-like growth factor 1 (IGF-1), Lanreotide, Levoketoconazole (Recorlev), MTD201, MYCAPSSA , Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Octreotide-RP, Pasireotide, Q-Octreotide, RECORLEV (levoketoconazole), SIGNIFOR® (Pasireotide), SOM230, Somatoprim, Somatostatin receptors (SSTR)

NOTE - THIS IS IN NEED OF AN UPDATE AND IS ON MY LIST OF THINGS TO DOThis is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. AbstractAs most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide. You can click on the links for information on both of these well-known NET treatments. This post will focus on the not so well known and anything in the pipeline including different delivery…

21 Mar 2016

By Ronny Allan

5 Comments

100,000 blog views – thank you!

Living with Neuroendocrine CancerNeuroendocrine cancer, Neuroendocrine tumour (NET)

NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook. …

22 Oct 2015

By Ronny Allan

7 Comments

Your Money or Your Life

Inspiration, Survivorship, TreatmentAlopecia, Chemotherapy, Hodgkin lymphoma, Immunotherapy, Keytruda, Melanoma, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nivolumab (Opdivo), Opdivo (Nivolumab), Pembrolizumab (Keytruda), Stem Cell

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients. I've been following her story for almost 2 years and she has really inspired me. The title of this article is based on the title of a TV programme about…

15 Oct 2015

By Ronny Allan

17 Comments

Not all Cancer is simple

GeneralBreast cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below). Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with…

07 Sep 2015

By Ronny Allan

11 Comments

PRRT and the NHS England Cancer Drugs Fund (now archived information)

TreatmentAfinitor, DOTA-TATE, Everolimus, Gallium 68 (Ga68), Lu-177, Lutathera, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nuclear medicine, Octreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radiolabelled somatostatin analogue, Radionuclide, Yttrium 90 (Y90)

Please note this post is now historic information - PRRT (Lutathera) was eventually approved for use in UK. See the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF). You can read the detail of the decision here: CDF Statement. PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours. This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after…

18 Aug 2015

By Ronny Allan

35 Comments

Neuroendocrine…..the little suckers get everywhere!

AwarenessCarcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

UNDER REVIEW FOR REPUBLISHING USING 2025 DATA One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'. The response was amazing and on twitter it…

07 Jan 2015

By Ronny Allan

7 Comments

The Mother of all Surgeries

TreatmentChemotherapy, Distal pancreatectomy, Hyperthermic intraperitoneal chemotherapy (HIPEC), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pseudomyxoma peritonei (PMP), Surgery, Total pancreatectomy

My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were…

05 Dec 2014

By Ronny Allan

0 Comments

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Somatostatin analogues

UNDER CONSTRUCTION I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since…

Tag: Neuroendocrine tumour (NET)