Living with Neuroendocrine Cancer Archives

26 Aug 2023

16 Comments

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diet, Hormones, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL)

When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity. This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or…

17 Jul 2023

By Ronny Allan

2 Comments

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentCancer surveillance, Diagnosis, Multidisciplinary team (MDT), NET Centre of Excellence, Surveillance, Tumor board

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny Allan What is a NET Specialist? "What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor…

03 Jun 2023

By Ronny Allan

1 Comment

Getting back in the saddle

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with RonnyCancer, Survivorship

The "getting back in the saddle" metaphor - I thought back about a few periods since my diagnosis on 26th July 2010 about how I would 'get back in the saddle'. I suspect many cancer patients experience similar junction points in their own journeys. After I was told about my metastatic Neuroendocrine Cancer, work was my anchor, something that I felt comfortable and in control, so in effect that was my metaphoric saddle in the early days. But as my treatment came into view, particularly major surgery, clearly new thoughts about how quickly I could get 'back into the saddle'…

01 May 2023

By Ronny Allan

1 Comment

Summary of April 2023 on RonnyAllan.NET

Living with Neuroendocrine Cancer, NewslettersAdvanced neuroendocrine cancer, Cancer survivor

Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary of my website RonnyAllan.NET in April 2023. A challenging month given other commitments and a rib injury sustained on holiday but pleased with my output. I hope there is something you missed and can catch up here. As usual, share this with anyone you think may benefit. Many thanks for reading. Oh yes, it's the great pretender - a new entry A new RonnyAllan.NET awareness campaign and it deserves to be shared to the world…

16 Apr 2023

By Ronny Allan

3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Is this the face of a cancer patient? Yes, it is actually. This photo was taken on 31st October 2010. Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases. Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …

10 Apr 2023

By Ronny Allan

0 Comments

GLP-1 receptor agonists (e.g. semaglutide) for adults with type 2 diabetes/weight loss – The Neuroendocrine Tumour (NET) Effect

Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect SeriesGLP-1, MEN2 syndrome, Semaglutide, Type 2 diabetes

Before you read this… This article is provided to support understanding of how GLP-1 receptor agonists (for example, semaglutide) may relate to type 2 diabetes, weight loss, and neuroendocrine tumours (NETs). It is intended for general education only and is not suggesting that these medicines are suitable or unsuitable for you or anyone else. Every case is different. Only your own specialist team can assess your individual situation and advise on the risks, benefits, and alternatives of GLP-1 receptor agonists or any other treatment in the context of your health and any NET diagnosis. Update 18th August 2026. It seems…

05 Mar 2023

By Ronny Allan

0 Comments

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAlternative medicine, Alternative therapies

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…

03 Jan 2023

By Ronny Allan

2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing…

31 Dec 2022

By Ronny Allan

4 Comments

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with RonnyCancer survivor, Survivorship

Another year of survivalI normally only do a Facebook happy new year, but I wanted to make sure I reached everyone who follows my blog and other social media outlets. All of the outlets above have kept my viewing figures high and although I only beat 2021 viewing figures by almost 10,000, it is an upward trend, so I'll take it!2022 was an amazing year in many respects. I continue to live well with Neuroendocrine Cancer, almost like a chronic disease. I'm not foolish enough to think I don't need surveillance though. That is ongoing, including regular contact when…

23 Dec 2022

By Ronny Allan

2 Comments

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with RonnyCancer survivor, Survivorship

Background to 2022I've only ever sent these on Facebook but this year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter, 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 2022 total of around 270,000 blog hits and hitting the milestone of 2 million blog hits in early November - that was a major boost. It takes 3-4 years to get a million hits based on current performance. This…

23 Nov 2022

By Ronny Allan

6 Comments

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

Awareness, Inspiration, Living with Neuroendocrine CancerMisdiagnosis, Neuroendocrine cancer, Pancreatic cancer, Surgery

BREAKING NEWS I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary. However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner…

05 Nov 2022

By Ronny Allan

0 Comments

Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment64Cu-DOTATATE, Ga68 PET/CT, Somatostatin receptors (SSTR), SSTR-PET

Incidental Findings in SSTR PET Somatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed…

23 Oct 2022

By Ronny Allan

0 Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient AdvocacyBenign, Hemangioma, Liver cyst, Liver lesion, Liver metastases, Lung nodule

Background I wanted to focus on two terms "lesion" and "cyst" given these are mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told (or read before an appointment) this was something found during diagnostic scans. Sometimes cysts are included in the term "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (non-cancerous) or malignant (cancerous)". The majority of liver lesions are non-cancerous (benign) and will not be related to Neuroendocrine Cancer, or any cancer. Many lesions are detected during…

10 Oct 2022

By Ronny Allan

0 Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Cancer surveillance, Epidemiology, No evidence of disease (NED), Prognosis

Musings from a metastatic NET patient of 15 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…

12 Sep 2022

By Ronny Allan

0 Comments

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient AdvocacyLung nodule

BackgroundA focus on the issue of Lung nodules given I see these mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told this was found during diagnostic scans. Sometimes a lung nodule is also called a ‘pulmonary’ nodule and the two phrases mean the same thing.A lung nodule is an abnormal growth that forms in a lung. You may have one nodule on the lung or several nodules. Nodules may develop in one lung or both. Most lung nodules are benign (not cancerous). Only rarely, lung nodules…

12 Jul 2022

By Ronny Allan

2 Comments

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, SurvivorshipCOVID-19

Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available. We both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020. To…

04 Jun 2022

By Ronny Allan

5 Comments

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancer surveillance, Cancer survivor

Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is. In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets. With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey.Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions. Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors, and you are sure the destination has…

08 Apr 2022

By Ronny Allan

1 Comment

My illness may be invisible, but I am not

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

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…

03 Jan 2022

By Ronny Allan

0 Comments

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials and Research, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentNeuroendocrine cancer

I should be happy with over a quarter of a million views in 2021 but I'm not! Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project. I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer…

09 Sep 2021

By Ronny Allan

6 Comments

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny

Updated and reviewed 20th February 2026 - UK travel insurance - opinion. FOR UNITED KINGDOM (UK) NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients. One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. I also declare no interest in any of the companies listed,…

08 Aug 2021

By Ronny Allan

1 Comment

Cancer-related fatigue (CRF) – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect SeriesCancer related fatigue, Depression, Diabetes, Diarrhea, Fatigue, Hypothyroidism, Invisible illness, Malabsorption, NET syndromes, Nutrition, Quality of LIfe (QoL)

In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…

04 Aug 2021

By Ronny Allan

8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Diarrhea, Diet, Flushing, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues

I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. Some talks were not recorded and/or permitted to be shared. These include (but are not limited to) a presentation to 'Global' Ipsen in Paris, UK…

31 May 2021

By Ronny Allan

4 Comments

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipCancer survivor

https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021. I can now confirm, I'm halfway there in 5 months. I have buffer time ..... but only if I keep going. By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014. 500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite…

13 Feb 2021

By Ronny Allan

0 Comments

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…

17 Dec 2020

By Ronny Allan

4 Comments

The other Big C can be dangerous too

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer, Vaccine

I managed to avoid a C-19 infection all the way through several lockdowns, and I deployed a rigorous protection regime throughout. Ditto for Chris. I have a chest infection history, so for me, it was a no-brainer to take advantage of the vaccines on offer.July 2022 - boom! It slipped through the net (no pun). I have to say it was not an enjoyable experience and I would not like to repeat it. December 2023 - boom! Back to back COVID and chest infection.read more about that episode here:Ronny Allan - I delayed this post for two main reasons, firstly...…

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…

05 Sep 2020

By Ronny Allan

0 Comments

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine CancerBrain serotonin, Dopamine, Neuroendocrine tumour (NET), Oxytocin, Peripheral Serotonin, Serotonin

One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), even taller than my garden fence (more difficult). Of course, I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it. Nonetheless, I still felt a remarkably close association with the outcome! It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant…

13 Jul 2020

By Ronny Allan

4 Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Episode 12 of my Living under COVID-19 series. A story of surviving, cycling, Scottish holiday memories including the 'Fairy Pools'7th JuneNational Cancer Survivors Day was on 7th June. It's a celebration of life and if you're reading this, you're surviving. Share and let people know you're still here. Or just tell me below!I'm still here!#NationalCancerSurvivorsDayA wee story to finish off #NationalCancerSurvivorsDay22 miles of cycling today to celebrate life. A story about woods, animals, a long straight road with an interesting history and a bombing range.We had already cycled and walked parts of this route but our new e-bikes mean we can go…

26 Jun 2020

By Ronny Allan

0 Comments

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 11 of my Living under COVID-19 series. A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk .... if you missed it it's here. We have another 3 or 4 days of hot weather so it's bikes again soon. Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian's Wall on 31st May 2014. We were so happy and relieved to finish -…

19 Jun 2020

By Ronny Allan

0 Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Episode 10 of my Living under COVID-19 series. A story of the 'Wall', Swans, Dundee and New Forest History26th May 20206 years ago today, Chris and I set off an a 6 day hike across the 2000 year old world heritage site of Hadrian's Wall in northern England. It was an experience we'll never forget, not just for the long 84 mile slog but the natural beauty, the interesting places we visited and the people we met. We were raising funds for the local NET guys PLANETS Charity - co-founded by my surgeon (Neil Pearce) and interventional radiologist (Brian Stedman) and brilliantly…

09 Jun 2020

By Ronny Allan

6 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

Living with Neuroendocrine CancerCOVID-19, Neuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 9 of my Living under COVID-19 series. A story of cream tea, peaks, blue sky and more peaks! 19th May 2020 Figure of eight bike ride yesterday around the outskirts of my town. 9 miles (still feeling the 23 miles from Saturday!). No photos, just a quick spin session. However, one of those Facebook memories came up from last year where we visited a nice town called Brockenhurst in the New Forest. Lovely little place smack bang in the…

13 May 2020

By Ronny Allan

2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 5) – A story of greenery, sun, adventure and Irrfan

Living with Neuroendocrine CancerCOVID-19

This is the fifth part of a new series entitled: Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions – A story of greenery, sun, adventure and Irrfan During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read. In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was…

11 May 2020

By Ronny Allan

2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D

Living with Neuroendocrine CancerCOVID-19

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the fourth part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions.During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but again,…

04 May 2020

By Ronny Allan

1 Comment

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Living with Neuroendocrine CancerCOVID-19

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the third part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but…

25 Apr 2020

By Ronny Allan

0 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 2) – the bench walk

Living with Neuroendocrine CancerCOVID-19

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the second part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read. In the first update of this series, I explained that I kept my diary going,…

23 Apr 2020

By Ronny Allan

2 Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 1) – out of isolation

Living with Neuroendocrine CancerCOVID-19

It's been over a week since I came out of my self imposed isolation of 14 days after developing "a new and continuous cough". Although I'm much better now, nothing has really changed in that I'm sticking to my own property pretty much all of the time. In case you missed my 14 day self isolation diary - I compiled it here - click here to read.Since coming out of isolation, we've been for a couple of government mandated walks from our house (max 1 hour) - it's fairly easy to find empty streets and lanes around here, so we're…

08 Jun 2019

By Ronny Allan

0 Comments

New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

Clinical Trials and Research, Living with Neuroendocrine CancerGa68 PET/CT, Ga68-FAPI PET/CT, Neuroendocrine cancer, Theranostics

Updated 17th March 2023 When I wrote about this new PET in June 2019, it was for interest only, but I curiously noted the existence of "NET" in the list of 28 cancers. It is designed to compete with FDG PET. The study comes from a joint China/Singapore initiative. This update now confirms it could be more efficient than FDG for those types of cancer where FDG is the optimum imaging. Headline "A new radiotracer, 68Ga-FAP-2286, has been found to be more effective than the most commonly used nuclear medicine cancer imaging radiotracer, 18F-FDG. In a study published in the March issue…

22 Feb 2019

By Ronny Allan

0 Comments

“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

Inspiration, Living with Neuroendocrine CancerNeuroendocrine cancer, Survivorship

Judy Golz is a retired registered nurse — she’s also a neuroendocrine cancer survivor. Like many nurses who get cancer, their experience in working in the healthcare industry possibly helps get a quicker diagnosis, possibly because they can recognise symptoms and likely differential diagnoses and it possibly helps knowing how the healthcare system works. But with uncommon and complex diseases, it's not always that straightforward, even for a nurse or any other healthcare professional. But Judy makes an excellent point about the quantity and quality of medical information now out there, including for Neuroendocrine Cancer and suggested she would be in…

20 Dec 2018

By Ronny Allan

7 Comments

Q-Sphera™ – Next Generation Somatostatin Analogue delivery system?

Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentClinical trial, MTD201, Q-Octreotide, Q-Sphera, Sandostatin

Update May 2026. There has been no further news about this initiative so it should be assumed that the development has ceased. Internet searches indicate that n late 2022, Midatech announced an acquisition to expand its portfolio and subsequently changed its name to Biodexa Pharmaceuticals PLC. There is no indication on their new website of any treatment in the pipeline for NET. UPDATE: In March 2020, the decision was taken to terminate further in-house development of the MTD201 programme with immediate effect although the asset remains available for licensing. All activities connected with MTD201 have been wound down expeditiously and…

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

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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,…

08 Oct 2018

By Ronny Allan

5 Comments

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipBlood glucose, Diabetes, HbA1c, Lanreotide, Neuroendocrine cancer

There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike"). It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home in 2012, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year. A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use. In fact, Chris got a new one out of the…

30 Aug 2018

By Ronny Allan

2 Comments

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment111In-DTPA-D-Phe1, 177Lu-Edotreotide (Solucin®), 212Pb-AR-RMX, 64Cu-DOTATATE, Advanced neuroendocrine cancer, Carcinoid tumour, Ga68 PET/CT, Ga68-DOTATOC, Generator (radionuclide), Indium 111-pentetreotide, NETSPOT, Neuroendocrine cancer, Octreotide, Octreotide scan, PRRT, Somatostatin receptors (SSTR), SPECT

Updated Jan 2026What is 64CU dotatate It’s a high‑resolution PET tracer for imaging somatostatin‑receptor–positive neuroendocrine tumours (NETs), offering better lesion detection, longer imaging windows, and lower positron energy than 68Ga‑labelled agents. It consistently produces high tumour‑to‑background contrast and often finds additional metastatic sites missed by older SPECT agents like 111In‑octreotide. 🧬 64Cu‑DOTATATE vs 68Ga‑DOTATATE A clear, patient‑friendly comparison Both scans are excellent for finding neuroendocrine tumours (NETs). They work in the same basic way: a tracer attaches to somatostatin receptors on NET cells, and a PET/CT scanner shows where those cells are. The differences mainly relate to image clarity, timing,…

16 Aug 2018

By Ronny Allan

10 Comments

Aretha Franklin 1942-2018: Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine CancerAretha Franklin, National Cancer Institute, Pancreatic cancer

On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Aretha Franklin passed at her home in Detroit. The statement said "Franklin's official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin's oncologist, Dr. Philip Phillips of Karmanos Cancer Institute" in Detroit. Clearly, he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast-moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer. All of these incorrect posts will now be embedded in…

30 Jan 2018

By Ronny Allan

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I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Asthma, Carcinoid syndrome, Cholecalciferol, Creon, Diet, Eliquis (apixaban), Fat soluble vitamins, Hormones, Incurable cancer, Lanreotide, Levothyroxine, Malabsorption, Medicines and Healthcare Products Regulatory Agency, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Omega 3, Pancreatic enzyme replacement therapy (PERT), Probiotic, Pulmonary embolism, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), Supplements, Vitamin ADEK, Vitamin B12, Vitamin D, Water soluble vitamins

If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds! However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests. Here, conversations bypass the weather and focus on being under the weather! I thought…

26 Jan 2018

By Ronny Allan

4 Comments

BREAKING NEWS – US FDA Approves Lutetium Lu 177 dotatate (Lutathera®) – PRRT?

Living with Neuroendocrine Cancer

PRRT was approved in USA on 26 Jan 2018. The approval is for the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. CLICK HERE. The extended access program (trial) is no longer offered but these locations should be ahead of the game in terms of provision, notwithstanding insurance and provision of sufficient nuclear material. Read more about PRRT by clicking here Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign…

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…

12 Dec 2017

By Ronny Allan

3 Comments

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Everolimus, Flushing, Hormones, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, PRRT, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…

Category: Living with Neuroendocrine Cancer