Patient Advocacy Archives

13 Feb 2021

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Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancer surveillance, Tumour marker

Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET. In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…

04 Jan 2021

By Ronny Allan

0 Comments

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient AdvocacyBowel cancer, Carcinoid, Colon cancer, Colon NET, Colorectal cancer, Epidemiology, Incidence, Neuroendocrine tumour (NET), Rectal cancer, Rectal NET

Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data. For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…

23 Dec 2020

By Ronny Allan

2 Comments

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials and Research, Patient AdvocacyCancer of unknown primary (CUP), DNA, DNA methylation-based profiling, MEN1 syndrome, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Pathology, Von Hippel-Lindau (VHL) Syndrome

It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown. I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here. In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could…

13 Dec 2020

By Ronny Allan

2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Biomarker, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lu-177, Lutathera, Molecular markers, NETest, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Standardised uptake value (SUV), Tumour marker

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…

01 Dec 2020

By Ronny Allan

15 Comments

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid, Neuroendocrine cancer

Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million! Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall…

10 Sep 2020

By Ronny Allan

4 Comments

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient AdvocacyNeuroendocrine cancer, Pancreatic cancer, Pancreatic NET (PanNET)

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had. I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure. In it he said "I'm vertical" in classic Jobs language and positive outlook. Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a…

02 Sep 2020

By Ronny Allan

0 Comments

1.4 million thanks!

Awareness, Patient AdvocacyNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site. So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share. Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny

28 Jul 2020

By Ronny Allan

3 Comments

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect SeriesAcromegaly, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Hypercalcemia, Hyperglycemia, Hypoglycemia, Neurologic paraneoplastic syndromes, Paraneoplastic syndromes, Syndrome of inappropriate antidiuretic hormone secretion (SIADH)

Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms. Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios. I eventually filtered out papers based on the expertise of the authors and the common threads running in each…

18 Jun 2020

By Ronny Allan

1 Comment

My interview with ITM – I’m still here!

Awareness, Clinical Trials and Research, Patient Advocacy177Lu-Edotreotide (Solucin®), Clinical trial, COVID-19, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Peptide receptor radionuclide therapy (PRRT)

Facebook X Pinterest WhatsApp Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT). The company is formally known as ITM Isotopen Technologien München. One of their pipeline developments is 177Lu-Edotreotide in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment. I actually wrote about this trial after attending a workshop at the…

26 Mar 2020

By Ronny Allan

8 Comments

My Self Isolation Diary – COVID-19 2020

Inspiration, Patient AdvocacyCOVID-19

COVID-19 reminds me of some of the issues with Neuroendocrine Cancer e.g. is this a normal day to day cold/flu/chest issue or is it COVID-19? At least COVID-19 is the number one awareness topic in the universe, so people are very very aware. Just as well because it has the potential to kill hundreds of thousands, perhaps millions of people. It's only right that cancer patients take strict precautions because they should all at least be considered as an 'at risk' category, and many will be on their national 'most vulnerable' lists.So, when I started to cough and wheeze on…

21 Mar 2020

By Ronny Allan

2 Comments

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, TreatmentCoronavirus, COVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date. For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance. NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or…

13 Mar 2020

By Ronny Allan

1 Comment

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, SurvivorshipAnxiety, Cancer, COVID-19, Neuroendocrine cancer

OPINION. I guess many people are feeling pretty scared right now. Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news. I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal. We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep. I don't know about you but I would hate…

09 Mar 2020

By Ronny Allan

5 Comments

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, SurvivorshipCancer, Coronavirus, COVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date. For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article…

05 Jan 2020

By Ronny Allan

0 Comments

Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient AdvocacyPheochromocytoma

This story is about my friend Kirsty. She lives with metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands - (read more here). She has an amazing blog that is not just for Pheochromocytomas or even just for Neuroendocrine Cancer patients and supporters because she has not let her condition stop her from doing normal and amazing stuff. The challenges she has faced and still facing, are very similar to many cancer patients. In 2012, Kirsty moved from UK to New Zealand (i.e. to the other side of the world) because of her as yet undiagnosed illness.…

17 Nov 2019

By Ronny Allan

2 Comments

Prognostics and Crystal Balls

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Oncologist, Prognosis

When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. 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,…

09 Nov 2019

By Ronny Allan

3 Comments

“Please find something wrong with me”

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

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common…

12 Oct 2019

By Ronny Allan

3 Comments

The Flu shot – it’s not just about you

Patient Advocacy, SurvivorshipCancer survivor, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Vaccine

An Opinion Post Edit: October 2024. I continue to believe the flu shot is even more important in the era of COVID-19. The flu is an illness that typically spreads in autumn and winter. A major flu outbreak could potentially overwhelm a person who might contract both at once or overlap. In fact, in Dec 2023 after contracting my second infection of COVID-19, I had a back to back regular chest infection needing antibiotics. OK, I still succumbed to both even after having both shots in that year, but who knows what would have happened without them. Like last year, I…

28 Feb 2019

By Ronny Allan

6 Comments

From dying to living, to hell and back

Awareness, Inspiration, Patient AdvocacyMisdiagnosis, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Prognosis

I once wrote a post about patient stories, in particular the ones I receive in my private messages. The headline was "The shock effect never wears off". But none have been more shocking than the one I received early in 2019. (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen. I was so moved by this story,…

21 Nov 2018

By Ronny Allan

10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor, Carcinoid syndrome, Diabetes, Hypothyroidism, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Surgery

I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…

20 Oct 2018

By Ronny Allan

1 Comment

How to Talk to a Cancer Patient Without Being a Complete Twit

General, Humour, Living with Neuroendocrine Cancer, Patient AdvocacyNeuroendocrine cancer

I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'. Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with. Personally I try to balance my reactions to not come over as…

10 Oct 2018

By Ronny Allan

0 Comments

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting. It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter,…

15 Jan 2018

By Ronny Allan

11 Comments

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipInvisible illness, Neuroendocrine cancer

This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms. Probably long overdue. For the record, I don't have a visible disability, nor do I have access to any special schemes or 'perks' to gain any advantage. I quite like to walk and don't really care how far it is to the building. Now and then I do need short notice access to a toilet facility,…

20 Dec 2017

By Ronny Allan

5 Comments

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipBiopsy, Grade, Hormones, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery, Surveillance, Thyroid, Tumour marker, Vitamin B12, Vitamin D

Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…

20 Nov 2017

By Ronny Allan

5 Comments

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Allergies, Atopic dermatitis, Bradykinin, Carcinoid syndrome, Eczema, Food allergy, Gastrinoma, Glucagonoma, Histamine, Hormones, Lanreotide, Lung NETs, Malabsorption, Mastocytosis, Merkel cell carcinoma, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, Pheochromocytoma, Quality of LIfe (QoL), Rash, Rosacea, Serotonin, Somatostatin analogues, Substance P, Tachykinin, Zollinger-Ellison Syndrome

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier". For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors most…

24 Oct 2017

By Ronny Allan

2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Appendiceal NET, Bronchial NET, Cabozantinib, Diarrhea, Fatigue, Ga68 PET/CT, Lu-177, Lutathera, Lymph nodes, NETTER-1, North American Neuroendocrine Tumor Society (NANETS), PRRT, Quality of LIfe (QoL), Somatostatin analogues, Somatostatin receptors (SSTR), SSTR-PET

NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not…

16 Oct 2017

By Ronny Allan

2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biological therapy, Carcinoid tumour, Chemotherapy, Cure, Full remission, Hormones, Incurable cancer, Lanreotide, Liver directed therapy, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), No evidence of disease (NED), Oncolytic virus, Palliative treatment, Partial remission, Quality of LIfe (QoL), Somatostatin analogues, Surgery

OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions.…

02 Oct 2017

By Ronny Allan

3 Comments

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biopsy, Carcinoid tumour, Core Biopsy, Incurable cancer, Mammogram, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Ultrasound

click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…

28 Sep 2017

By Ronny Allan

19 Comments

Ever wonder what caused your Neuroendocrine Cancer?

Patient AdvocacyAtrophic gastritis, Carcinoid tumour, DNA, Gastric NET, Hereditary cancer syndrome, Incurable cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Neurofibromatosis type 1 (NF1), Pernicious anaemia, Pheochromocytoma, Small cell lung cancer (SCLC), Small intestine NET (SI NET), Zollinger-Ellison Syndrome

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

08 Jun 2017

By Ronny Allan

20 Comments

8 tips for conquering fear – Living with Neuroendocrine Cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Incurable cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on. Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a…

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…

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…

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…

01 Oct 2016

By Ronny Allan

1 Comment

Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentCancer grading, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Pancreatic NET (PanNET), Prognosis, Surgery

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…

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…

19 Sep 2016

By Ronny Allan

14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer

It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…

24 Aug 2016

By Ronny Allan

8 Comments

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with RonnyAdvanced neuroendocrine cancer, Incurable cancer, Quality of LIfe (QoL)

"Yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "We must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500"…

18 Feb 2016

By Ronny Allan

12 Comments

Patient power – use it!

Inspiration, Patient AdvocacyMetastatic Neuroendocrine Cancer, Quality of LIfe (QoL)

I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors. However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication. The blog then commented on a number of tips for better doctor-patient relationship and communication. These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying…

11 Feb 2016

By Ronny Allan

12 Comments

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipNeuroendocrine cancer, Physician, Quality of LIfe (QoL), Surgeon

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.However, people with less…

03 Feb 2015

By Ronny Allan

27 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Lanreotide, Malabsorption, Neuroendocrine cancer, Octreotide, Somatostatin analogues, Steatorrhea

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide: 10 (then 13) more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale…

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…

01 Dec 2014

By Ronny Allan

2 Comments

Tobacco and Cancer: A smoking gun?

Patient AdvocacyCancer causes, Pancreatic cancer

I've never smoked so I'm reasonably confident my own cancer experience is not related to this type of personal lifestyle. I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour. We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK. Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all. Smoking also increases the risk of at least 13 other…

30 May 2014

By Ronny Allan

2 Comments

Hadrian’s Wall Day 5 – Pass the morphine!

Patient Advocacy

When I was in hospital for major surgery, I remember being briefed by my excellent nursing staff about all the tubes and pipes intruding and protruding into/from my body. One of the most important ones in the early days was known as PCA - Patient Controlled Analgesia. Basically, I could click a button whenever I felt the post-surgical pain was too much. As this administered morphine, safeguards were built in - for example, the machine limited me to 2 clicks within 5 minutes and then it wouldn't accept a request for another 5 minutes. That handheld push button device was…

29 May 2014

By Ronny Allan

2 Comments

Hadrian’s Wall Day 4 – Welcome to Cumbria!

Patient Advocacy

That was a long day and a hard walk! Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex-Army colleague, Jim Waterson. Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84. Usual banter all day brought back more memories and news about some old mutual friends. Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.The route was a mixture of hilly crags and rolling fields…

28 May 2014

By Ronny Allan

5 Comments

Hadrian’s Wall Day 3 – Spectacular but wet!

Patient Advocacy

Chris and I adopted the famous military 'buddy buddy' system this morning by checking each other's feet and applying blister pads. We then set off on a hilly section with some spectacular scenery. But first we collected our friend Dave Taylor who was walking this tough section with us.The forecast rain didn't arrive until around an hour into the walk and then another hour after that it was time for waterproof trousers. Pretty rough underfoot with plenty mud and damp grass. Stonework was in some places dangerously slippy. I fell once, fortunately I managed to miss landing on…

27 May 2014

By Ronny Allan

4 Comments

Hadrian’s Wall Day 2 – The wall appears

Patient Advocacy

This was the first real piece of the wall we say and it's the second day We must have been doing a blistering pace today! Four of them – I claim 3 and Chris has one. Nothing spectacular but a discomfort we could do without. Blister kit has been deployed and resupply to see us through the week will RV with us on Day 4 at Steel Rigg (cheers Jim W). In hindsight I should have deployed the blister kit last night as I had a feeling my tender feet would be even more tender by end of play today.…

22 May 2014

By Ronny Allan

1 Comment

My blog goes International!

Awareness, Patient Advocacy

One of the most interesting statistics in my blog app is the total number of views recorded each day. It even breaks the total down into which posts were most viewed and which countries the viewers were from (but please note it does not identify the name or any other details of viewers). I'm always very pleased to have readers from overseas locations - I hope they enjoy reading my blog and find it useful. To date, these include readers from USA, Australia, Canada, New Zealand, Barbados, Belize, France, Germany, Switzerland, Belgium, Netherlands, Luxembourg, Portugal, Austria, UAE, Bahrain, Philippines, Nigeria, Kenya, Croatia,…

19 May 2014

By Ronny Allan

1 Comment

If it’s not raining, it’s not training

Patient AdvocacySurgery

Only a week left until Chris and I set off on our 84 mile trek across Hadrian's Wall in the North of England. We've been training for this since January 2014 and probably covered sufficient distance to have walked the wall 5 times over! Didn't stop us going for a fast short walk this morning and despite the heat there was no sweat. I think we're ready :-) For the last few days we've been thinking it might be tougher if this heat continues. Only a month ago, we were saying it might be tougher with all the rain we were having! We…

18 May 2014

By Ronny Allan

1 Comment

“I may not be rich, but I do have priceless grandchildren”

Patient Advocacy

Most of us will have experienced the ubiquitous quotations that somehow manage to go viral around Facebook and emails? Mother, Father, Son, Daughter, Grandson, Granddaughter etc. I instinctively want to share those and like the post but something nearly always prevents me from doing so. I suspect there is something in me that says "don't follow the crowd" or perhaps I'm just a shy private person at heart? (I can hear some of you laughing .....). However, today, I'm publishing the fact that grandchildren are indeed wonderful! So what has brought on this sudden emotional outburst? I have 4…

Category: Patient Advocacy