Living with Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin 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 for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

23Oct 2022 by Ronny Allan No Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

BackgroundI 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 found during diagnostic scans. Sometimes these are described by doctors as "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (not cancer) or malignant (cancer)". The majority of liver lesions are noncancerous (benign) and will not be related to Neuroendocrine Cancer. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis. This is particularly important if these lesions are in addition to known cancerous ones included with…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Musings from a metastatic NET patient of 12 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 hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

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

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A to Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary, and ensuring all definitions…

12Sep 2022 by Ronny Allan No Comments

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

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 are a sign of cancer in the lung. They can show up on imaging scans like X-rays or CT scans and are only found when doctors are checking for something…

05Sep 2022 by Ronny Allan 2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many.I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor. I was inferring that we shouldn't unnecessary restrict our lives when something is low risk, particularly when something we are told is a 'no no' has been said out of context and…

24Jul 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more worrying situation in my opinion. Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…

12Jul 2022 by Ronny Allan 2 Comments

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, Survivorship

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 this day, we (mostly me) remain slightly paranoid about protecting ourselves. e.g. I have maintained the habit of not touching door handles with my bare hands to this day. My…

12Jun 2022 by Ronny Allan 7 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results. I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get. Has it grown, has it shrunk? What if ....... Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling. How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired. For example, I try not to be concerned about results over which I have little control once the…

04Jun 2022 by Ronny Allan 5 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 been reached. In a few cases, journeys may be extended or new ones started. For late stage incurable NETs, thinking your journey is going to be a short…

08Apr 2022 by Ronny Allan 1 Comment

My illness may be invisible, but I am not – Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Survivorship

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 before making a vague announcement I had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought. Sorry…

03Jan 2022 by Ronny Allan No Comments

Blog review and top 10 for 2021: RonnyAllan.NET

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

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 outlets for my blog posts. Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…

27Sep 2021 by Ronny Allan 3 Comments

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy

Opinion PostI've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group. The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer". The answer is almost impossible. Here are a few of the reasons why these things get muddled:1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. 2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too. No single diet suits everyone with…

09Sep 2021 by Ronny Allan 6 Comments

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Updated and reviewed 10th June 2022OPINION.FOR 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, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company. I do this to try to help others. I first started supporting this issue via Macmillan in 2017 but they have…

08Aug 2021 by Ronny Allan 1 Comment

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

In my patient support group of 7000+, 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 quite a while leading up to the diagnosis. That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…

04Aug 2021 by Ronny Allan 8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Caption: Talking to Ipsen 2016 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. I will keep adding them so they're all in one place. Published talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust. As usual, I was only too happy to help. …

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

31May 2021 by Ronny Allan 4 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Survivorship

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 but working on it (haha). I have several incentives, including: As a stage 4 cancer patient, I want to be as fit as possible to withstand any rigours I may…

13Feb 2021 by Ronny Allan No Comments

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving…

17Dec 2020 by Ronny Allan 4 Comments

The other Big C can be dangerous too

Living with Neuroendocrine Cancer

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. Today I received my 4th vaccine and am very happy to do so. If it offers any protection from serious illness, I'll gladly take it. Read my post on that here or click the photo below.[caption id="attachment_33846" align="aligncenter" width="640"] Click on the photo to read more[/caption]My covid experience is ongoing as a CT scan picked up ground…

01Dec 2020 by Ronny Allan 15 Comments

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 2 million: whilst accumulating around 20,000 followers across all my social media…

05Sep 2020 by Ronny Allan No Comments

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine Cancer

A memory from 5 years ago is this sunflower which 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! My most liked Facebook posts in 2020 (the year of COVID) related to plant and forest pictures and there is a reason flowers proved to be more popular than my other posts. Flowers, particularly with vibrant colour, stimulate our happiness hormones, including serotonin. Now, serotonin has a bad press in the Neuroendocrine Cancer world,…

19Jul 2020 by Ronny Allan No Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the list of known symptoms directly attributed to any of the syndromes except for the group of catecholamine secreting tumours known as Pheochromocytoma and ParagangliomaI decided to extend it to diet…

13Jul 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 Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 further in a shorter space of time - i.e. we…

26Jun 2020 by Ronny Allan No 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 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 - went straight to the only pub in the village of Bowness for a pint of well earned beer Lead picture is the view we had towards Scotland where we stayed that…

19Jun 2020 by Ronny Allan No 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 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 ran by our friend and NET Patient Layla Stephen. I think we raised just over £4000 on that walk, more than expected. Plus it was the only reason at the time…

09Jun 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 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 [caption id="attachment_18552" align="aligncenter" width="640"] In Brockenhurst, a New Forest town where animals mix freely with humans![/caption] 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 middle of the National Park. The reason it caught my eye was a picture…

13May 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 Cancer

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 prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it's my intention to also…

11May 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 Cancer

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, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce…

04May 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 Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_17894" align="aligncenter" width="623"] Aged 18 - that's me on the left. My hair is currently as long as it's been since then![/caption]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 again, only on my public Facebook page, so…

25Apr 2020 by Ronny Allan No Comments

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

Living with Neuroendocrine Cancer

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, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what…

23Apr 2020 by Ronny Allan 2 Comments

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

Living with Neuroendocrine Cancer

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 quite lucky. I did notice people keeping a wide berth of each other - very sensible.In UK, we're worried about our Prime Minister, no nation likes their leader being ill…

06Feb 2020 by Ronny Allan 9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment, and my follow up and support from a specialist centre were in place. I cope, but I wouldn’t say it’s easy living with…

04Sep 2019 by Ronny Allan 2 Comments

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer

Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many days out). [caption id="attachment_14267" align="aligncenter" width="960"] Motivation is often difficult[/caption]ExerciseEverywhere you look, there are experts telling us that exercise is good…

21Jul 2019 by Ronny Allan No Comments

The trouble with the NET (Part 4) – Cancer can kill but so can fake cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer. If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.I was also interested to read a number of articles about various aspects of this modern phenomenon. Firstly, in the magazine Wired, a major media company was forced to take down some cancer therapy videos after someone pointed out they were not scientifically factual. Not just patients who get fooled by these claims then?Much of the misinformation arrives via Facebook, and YouTube, two of the most commonly used social media tools. This article suggests a shockingly large majority of…

08Jun 2019 by Ronny Allan No Comments

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

Clinical Trials, Living with Neuroendocrine Cancer

[caption id="attachment_15259" align="aligncenter" width="840"] see citation below[/caption] New radiotracer can identify nearly 30 types of cancer (including NETs). Future potential for therapeutic application. This is a different type of radiotracer being currently being used in the approved market for NETs. It's availability and timeline is not yet known. Date: June 7, 2019 Source: Society of Nuclear Medicine and Molecular Imaging Summary: A novel class of radiopharmaceuticals has proven effective in non-invasively identifying nearly 30 types of malignant tumors. Using 68Ga-FAPI PET/CT, researchers were able to image the tumors with very high uptake and image contrast, paving the way for new applications in tumor characterization, staging and therapy. Red more here. https://www.snmmi.org/NewsPublications/NewsDetail.aspx?ItemNumber=31744 Watch this space for more data on availability timeline and what type of NETs were used in the trial…

18Apr 2019 by Ronny Allan 6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight,…

11Mar 2019 by Ronny Allan 4 Comments

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description. …

22Feb 2019 by Ronny Allan No Comments

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

Inspiration, Living with Neuroendocrine Cancer

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 a better place for self-diagnosis today. Two things spring to mind about this story. Neuroendocrine Cancer is such a complex disease, it can often be hard for healthcare professionals to…

14Feb 2019 by Ronny Allan 6 Comments

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer

I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA.Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled "Letter from America". This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through the…

20Dec 2018 by Ronny Allan 7 Comments

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

Clinical Trials, Living with Neuroendocrine Cancer, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 the manufacturing facilities in Bilbao have been closed. Following the termination of in-house development of MTD201, the Company realigned its strategy towards exploiting its Q-Sphera technology more broadly.Original Article belowIn my article listing the somatostatin analogues and their drug delivery systems pipeline (click here), there has been a very interesting development in a product called Q-Sphera (was previously known as Q-Octreotide). In a press release, it was announced that an unnamed 'pharma giant'…

21Nov 2018 by Ronny Allan 10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I have a lot to be thankful for [caption id="attachment_24013" align="aligncenter" width="1024"] Click on the picture to read[/caption] Not intended to come over as a pity party 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! [caption id="attachment_14152" align="aligncenter" width="640"] Click on the picture to read[/caption] 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 [caption id="attachment_3720" align="aligncenter" width="391"] Click on the picture to read[/caption] No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although…

20Oct 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 Advocacy

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 a 'pity party' and something which is genuinely offensive or upsetting to me as a cancer patient. I appreciate understanding and empathy, perhaps sympathy, but I certainly don't want pity.…

11Oct 2018 by Ronny Allan 8 Comments

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective. Warriors I used to do that for a living so…

10Oct 2018 by Ronny Allan No Comments

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials, 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, one can keep up to speed on what is or has been discussed. One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from…

08Oct 2018 by Ronny Allan 5 Comments

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship

[caption id="attachment_13876" align="aligncenter" width="2592"] Get on your bike![/caption] 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 deal! I'm reasonably fit (considering) but finding it so easy to opt for the sofa and there's always something worth watching on…

17Sep 2018 by Ronny Allan 2 Comments

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

OPINIONOne of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant.Any standard cancer nomenclature definition of the word 'tumour' will confirm the definition of the word tumour means it can either be benign or malignant. However, and while I'm sure there are benign NETs, the key statement to explain…

16Sep 2018 by Ronny Allan 3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers entitled a post in my group with "The hits keep coming" in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit of…

03Sep 2018 by Ronny Allan 14 Comments

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine Type". Her death certificate quoted "Pancreatic Neuroendocrine Cancer". Despite this, the media outlet that published her death certificate still led the article with the headline "Pancreatic Cancer". Exactly the same thing happened with Steve Jobs and a few others. And that's only the ones we know about - how many other pe0ple are being labelled and documented with the wrong cancer type?I…

30Aug 2018 by Ronny Allan 2 Comments

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

Clinical Trials, Living with Neuroendocrine Cancer, Treatment

Edit 21st January 2021. The imaging time window of 64Cu-DOTATATE positron emission tomography/computed tomography (PET/CT) for patients with neuroendocrine neoplasms can be expanded from one hour to three hours post-injection, according to new research published in the January 2021 issue of The Journal of Nuclear Medicine. Read more here Edit 4th September 2020. 64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020. Expanded Access Program via clinical trial now recruiting - see below. The objective of this trial is to provide patients with confirmed or suspicion of NET access to Copper Cu 64 Dotatate for the detection, localization, and monitoring of…