Patient Advocacy - Ronny Allan - Living with Neuroendocrine Cancer

29Sep 2023 by Ronny Allan 3 Comments

Never mind the Bollocks – here’s the cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw) As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else. You'll note they all begin with the letter 'S' except 'Comorbidities' and 'Coincidences'. However, these 2 were actually retrospective add-ons to the blog title and there is a potential overlap between both. Life…

28Sep 2023 by Ronny Allan No Comments

First and only FDA-cleared, fully automated chromogranin A assay

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient Advocacy

There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer. That said, it was still controversial when certain US guidelines were updated to recommend it is not regularly tested. It's well known for being a sensitive but non-specific marker for most tumours of Neuroendocrine type, the non-specificity is mostly due to the other conditions, some of which are highly prevalent in many countries, including but not limited to the use of proton pump inhibitors, heart disease and kidney disease. Another criticism has been the lack of faith in using it to assess reaction to treatment.I have to say,…

27Sep 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Question, Clarify, Confirm

Patient Advocacy

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist" but perhaps this post will supplement this list extending it to any doctor at any type of appointment, not just diagnosis. If your doctor or pathology report says you have…

05Sep 2023 by Ronny Allan 10 Comments

Update from Ronny Allan: No evidence of progressive disease at any site

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

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time. One of the disadvantages of 'incurable but treatable' is that Quality of Life (QoL) can in many cases be compromised due to the consequences…

26Aug 2023 by Ronny Allan 16 Comments

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

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 potentially controversial. I didn't really have much time to think them through properly at that point in time. However, over time, I started to realise the important of some of these…

21Aug 2023 by Ronny Allan 2 Comments

Piss off cancer, you’ve been annoying me for 13 years but I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

Actually it has been bothering me for more than 13 years, I just didn't know what was bothering me in the lead up. On 26 July 2010, had you said I'd be writing this 13 years later, I would have said no. I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking there. One thing though, everyone is…

12Aug 2023 by Ronny Allan 2 Comments

Lung cancer diagnosed early because of new tool

Clinical Trials and Research, Patient Advocacy

I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease. I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking. However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry of initiatives appear in my inbox in the last month or two and wanted to document those here. These may not have an impact on you currently but a sign…

26Jul 2023 by Ronny Allan 4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 13 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable, and unique to serotonin secreting midgut Neuroendocrine Tumours, it had caused a dense fibrotic…

24Jul 2023 by Ronny Allan 2 Comments

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, Survivorship

Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor. The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor. We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point. The clouds were moving fast over our heads, dropping their rain each time. We still had to climb to the top and it was steeper than the first hour of the walk. I won't lie and say it never crossed my mind to cut this bit of our walk out and head south on…

23Jul 2023 by Ronny Allan No Comments

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

Clinical Trials and Research, Patient Advocacy, Treatment

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins. Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use of tumour finding probes is not new and scientists have been looking at this for a number of years. Some healthcare commentators described some of these tools as working in…

19Jul 2023 by Ronny Allan No Comments

Biopsies – tissue is the issue!

Patient Advocacy

Biopsies for suspected cancer 13 years ago on 19th July 2010, I had a liver biopsy. Following some low hemoglobin and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, I eventually had to have a liver biopsy done to confirm the cancer. I won't lie and say it was an enjoyable experience. I vividly remember a lot of discomfort including pain. At the time no-one knew I had metastatic Neuroendocrine Tumours; no-one knew I had associated carcinoid syndrome. I suspect that may have played a part in the discomfort of that important procedure. The doctor carrying out the biopsy had several assistants in the room and sent for…

18Jul 2023 by Ronny Allan 1 Comment

A person with Cancer fell into a hole and couldn’t get out……….

Awareness, Patient Advocacy, Survivorship

A person with Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still and filled the bucket.A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it will…

17Jul 2023 by Ronny Allan 2 Comments

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny AllanWhat 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 who is not only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and…

10Jun 2023 by Ronny Allan 6 Comments

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, Survivorship

I started my "sometimes you gotta climb that hill" series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that. But in hindsight, I don't believe I could have done some of these hills before I was diagnosed! To be bluntly honest with myself and you guys, I was too busy at work to keep myself in shape. The "climbing hills" metaphor can also be applied to living with a diagnosis of cancer - there are many metaphorical hills to climbOne of the first…

06Jun 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Awareness is key, but it must be the right message

Awareness, Patient Advocacy

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards.It's not where it should be because some people, some organisations (including some so-called advocacy organisations) and even some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. One example is a recent ASCO publication where the authors suggested the perceived rarity of NETs is holding back clinical research (the same publication also stated that NETs are uncommon but definitely not rare).It's no secret that I have been fairly 'pushy' in this area for some years now, and I will continue to push and…

04Jun 2023 by Ronny Allan 2 Comments

Summary of May 2023 on RonnyAllan.NET

Newsletters, Patient Advocacy

Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as "Pancreatic Cancer" caused a storm within the Neuroendocrine Cancer community. Below, I'll list the top performing blog posts in May and no secret which one is listed first. Repeat after me: Maria Menounos has Neuroendocrine Cancer (ronnyallan.net) [caption id="attachment_42595" align="aligncenter" width="640"] Click picture or heading to read more[/caption] Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus) - (ronnyallan.net) [caption id="attachment_42803" align="aligncenter" width="640"] Read more by clicking on the picture or the heading above[/caption] The Human Anatomy of Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer [caption id="attachment_42728" align="aligncenter" width="640"] Click to read more on the picture or the…

03Jun 2023 by Ronny Allan 1 Comment

Getting back in the saddle

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

The "getting back in the saddle" metaphorI 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' were on my mind. In fact, one of the first questions I asked my surgeon was "how much time off do I need before I can drive and also go to work". …

24May 2023 by Ronny Allan No Comments

A spotlight on Chromogranin A

A Spotlight on NENs - Testing Series, Patient Advocacy

What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might explain why it's a good marker to use with Neuroendocrine Neoplasms. It is said to be a measure of tumour bulk. Depending on the test kit being used, you may also see test results for Chromogranin B (CgB) alongside CgA. CgB is said to be less affected by false positives and forms a useful adjunct to the more established chromogranin A measurement. The brand of test kit which includes CgB tends to be confined to Europe. Immunohistochemical Testing. CgA is one the most commonly used immunohistochemical (IHC) markers for neuroendocrine cells and their tumours. You may find the mention of CgA in your biopsy reports…

18May 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Catch them early, not late!

Awareness, Patient Advocacy

Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see. Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities. A few examples: 1. Most appendiceal NETs are found when patients present with pain in the right lower quadrant i.e. symptoms of appendicitis. The resulting appendectomy will find the tumour. However, it's true to say that most appendectomies will be connected to appendicitis…

12May 2023 by Ronny Allan No Comments

A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy

What are Rectal NENsRectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types found in the rectum are regular adenocarcinomas (the vast majority) and some other rare types including Gastrointestinal stromal tumors (GIST) and Lymphoma. The vast majority of rNENs will be well differentiated, i.e. rectal Neuroendocrine Tumours (rNETs) and are mostly indolent tumours treated effectively with surgical procedures if less than 1cm in size. Above that size there are different scenarios. Most will be found incidentally upon presentation of classic rectal symptoms or via colonoscopy screenings and faecal tests which lead to colonoscopy follow ups. They are typically diagnosed in older patients but the incidence in younger patients is on the increase, see author's note below in epidemiology section. Poorly differentiated…

28Apr 2023 by Ronny Allan 2 Comments

A spotlight on 5-HIAA

A Spotlight on NENs - Testing Series, Patient Advocacy

Background. It's important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type. Some are more specific than others. A wide range of tests may be necessary at diagnosis if the type of NET is not clear. This post will cover one of the main tests to check for a common type of Neuroendocrine Tumour (NET) that is known to secrete excess amounts of the hormone Serotonin leading to symptoms indicative of Carcinoid Syndrome. These tumours are often labelled using the antiquated and misnomer term ‘Carcinoid Tumour’ but more and more healthcare organisations and specialists are avoiding use of this term for several reasons. Mainly because the word has been 99% removed from the widely accepted World Health Organisation…

24Apr 2023 by Ronny Allan 5 Comments

The NET Detectives

Awareness, Patient Advocacy

The NET Detectives is an awareness post.Detecting NETsIn general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in the investigation, another hunt for clues.The number of cases where incidental diagnoses occur is fairly significant in certain types. I have no numbers but appendiceal NETs are a good analogy. Symptoms are…

23Apr 2023 by Ronny Allan No Comments

Low FODMAPs – The NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa. However, it's even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people. In the early days, I once said to my Oncologist "I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now". IBS is said to affect up to 1 in 7 of the 'western' population in varying degrees of severity with the symptoms of abdominal pain and abnormal bowel habits (constipation, diarrhea or a mixture…

16Apr 2023 by Ronny Allan 3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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. Other surgeries followed. In 2023, despite many side effects of treatment since 2010, he still looks like a picture of health, ......... but you should see his insides! [caption id="attachment_41830" align="aligncenter" width="640"]…

12Apr 2023 by Ronny Allan No Comments

Piss off cancer, it’s 12 years since my liver surgery!

Patient Advocacy, Survivorship, Treatment

I'm still here I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much…

10Apr 2023 by Ronny Allan No Comments

Semaglutide (e.g. Ozempic) For adults with type 2 diabetes – The NET Effect

Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

BackgroundThis subject of semaglutide (e.g. Ozempic) is appearing regularly in my private Facebook group, and I can see there might be some confusion out there. But first, I wanted to state that this post is not about me saying semaglutide (or whatever brand names are included in this post) is something you should be taking or not. That is the responsibility of your doctors in conjunction with you the patient. Nor is this post to be considered in any way a promotion for the drug or the manufacturer, I have no relationship or communications with the manufacturer, nor am I taking this drug. I merely wanted to point out some facts about this drug, mainly from the manufacturer's website and hopefully provide some context for those who may be confused. That said, clearly…

03Apr 2023 by Ronny Allan 4 Comments

Neuroendocrine Cancer: oh yes, it’s the great pretender

Awareness, Patient Advocacy

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment.It was hidingBut it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time?I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and documented. But despite my late stage and advanced diagnosis, some people were not as fortunate as me, an observant and efficient nurse sent me for blood tests, one thing or another led to…

01Apr 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy

Summary - Many thanks for supporting my social media in March. I remain keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances. Miranda and her parents are determined to help others despite the loss of Miranda. Click here or on the picture. [caption id="attachment_40842" align="aligncenter" width="640"] Click the picture to read more[/caption] My Home Page I turned it back on for a change of scenery. Click the picture…

30Mar 2023 by Ronny Allan No Comments

Pancreatic NET with carcinoid syndrome – not as common as you think

Patient Advocacy

Why do I need to write about this?I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome". Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites. It's a highly unusual scenario. Why is this a problem? A mixture of issues, including but not unlimited to; poor moderation in patient groups, websites out of date, doctors out of date, even the names of patient advocacy…

26Mar 2023 by Ronny Allan No Comments

A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

What are Appendiceal NENsAppendiceal Neuroendocrine Neoplasms (NENs) account for approximately 60% of all primary cancers in the appendix. The other main cancer types found in the appendix are regular adenocarcinomas (including signet ring cell and goblet cell) and mucinous neoplasms such as Pseudomyxoma Peritonei (PMP) or Low-Grade Mucinous Neoplasms (LAMD). Appendiceal neuroendocrine tumours (aNET) (i.e. well differentiated) account for 75% of all aNENs, are mostly indolent tumours treated effectively with simple appendectomy. In fact, most are incidentally found upon presentation of right lower quadrant (RLQ) pain in keeping with appendicitis. They are typically (but not exclusively) diagnosed in younger patients. Poorly differentiated appendiceal Neuroendocrine Carcinomas (aNEC) resemble small-cell or large-cell neuroendocrine carcinomas of the lung, have aggressive behaviour, and usually present with metastatic disease at diagnosis.Mixed neuroendocrine-non-neuroendocrine neoplasms (MiNEN) are possible, particularly…

10Mar 2023 by Ronny Allan No Comments

Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a middle ground. I started taking pancreatic enzyme replacement therapy in 2018 and often use that to offset a meal containing more fat than other meals, similar reducing dosages for lower fat…

05Mar 2023 by Ronny Allan No Comments

Treatment for Neuroendocrine Cancer: Beware of the alternatives

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

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 claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into…

04Mar 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of February 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy

Summary Another great start to 2023 and I thank those who continue to support my social media and this blog. I’m keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in February are listed below: Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes) This is not a surprise, it's one of my top 6 ever but it got a good read last month. It's the first thing people should ask at diagnosis. If this floats your boat - Click here or on the picture. [caption id="attachment_31312" align="aligncenter" width="640"] Click to read more[/caption]…

22Feb 2023 by Ronny Allan 2 Comments

A spotlight on Gastric Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, Treatment

What are Gastric NENsUnlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach. The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum). Clearly a key part of the gastrointestinal system, it processes food on its journey downwards.The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the body. After it leaves the stomach, the partially digested food passed into the intestines where it begins to be absorbed.The main parts of the stomach are shown below (often this can give…

02Feb 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy

SummaryGreat start to 2023 and I thank those who continue to support my social media and this blog. I'm keen to hear any suggestions of the sort of thing you would like me to research and publish.The top 10 most-read posts in January are listed below:Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patientThe Masters Snooker competition was held in January 2023 and there was a tremendous spike in views at the time of the final. The Masters Trophy was named the Paul Hunter trophy, and this incidentally generates a vast amount of awareness for Neuroendocrine Cancer as most of the hits come from outside the Neuroendocrine community. Click here or on the picture.[caption id="attachment_19993" align="aligncenter" width="416"] Click picture to read more[/caption]Cancer AblationA popular post with the headline of…

22Jan 2023 by Ronny Allan 2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy

USA finally commits UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare. That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such as “carcinoid” which seems rifer in USA than many other parts of the world. USA is normally at the forefront of progress so let’s hope they will now get on…

14Jan 2023 by Ronny Allan No Comments

Cancer Ablation

Clinical Trials and Research, Patient Advocacy, Treatment

What is Cancer Ablation?This is a minimally invasive surgical method to treat solid cancers. Special probes are used to “burn” or “freeze” cancers. Computed Tomography (CT), Ultrasound (US) or Magnetic Resonance Imaging (MRI) is used to guide and position the needle probe into the tumour. This requires only a tiny hole, usually less than 3 mm via which the probe is introduced. When the probe is within the cancer it is attached to a generator which “burns” or “freezes” the cancer. “Burning” refers to increasing the temperature of the tumour to such a level that cancer cells die. This is usually achieved by radio frequency probes, referring to the type of energy used to increase the temperature. “Freezing” refers to cryoablation which decreases the temperature to -40 C (-40 F)…

11Jan 2023 by Ronny Allan 3 Comments

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight. He said to drink full-fat milk. I was compliant in those days without reverting to Dr Google. Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on). My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. I guess there is milk in many other things such as dairy products which I happily consume. I don't believe I have any lactose intolerance to worry about. Given the…

08Jan 2023 by Ronny Allan 2 Comments

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

Clinical Trials and Research, Patient Advocacy

To burn or not to burn?I once wrote a post about Pancreatic NET "to cut or not to cut". You can read that here. Surgery for small pancreatic NETs remains controversial with most guidelines and study guidelines recommending surveillance for small primary tumours less than 2cm. There are exceptions to that, e.g. preventative surgery if the tumour is threatening important vessels and for functional cases where the surgery is palliative in nature. Contrast that against some patient perspectives where they just want it cut out (and some will 'surgeon-shop' until they find someone who will).Most pancreatic NET are lower grades (e.g. Grade 1 and 2) well differentiated, most are non-functional, many are localised. Functional tumours such as Insulinoma are mostly small and localised. A lack of sensitive and specific markers that…

03Jan 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, Treatment

ReviewIn 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 but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

01Jan 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of December 2022

Awareness, Newsletters, Patient Advocacy

SummaryDecember is always the quietest month of the year, no surprise why! However, the top 10 below is somewhat surprising, I guess some posts I make spike regardless of the time of year. Ever wonder what caused your Neuroendocrine Cancer?This clearly interests people because approaching 1000 people read it from one single post on Facebook. If this floats your boat - Click here or on the picture.[caption id="attachment_3019" align="aligncenter" width="530"] Click the picture to read more[/caption]Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)A frequently visited post, very helpful I'm told. It will one day be my most-read blog post. Click here or on the picture[caption id="attachment_14876" align="aligncenter" width="640"] Click the picture to read more[/caption]A Christmas 2022 message from RonnyA first-time…

31Dec 2022 by Ronny Allan 4 Comments

Happy New Year from Ronny

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

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 required with my primary and secondary care contacts. The biggest problem I've had this year has been succumbing to "the other big C" (after avoiding it for 28 months!) and…

23Dec 2022 by Ronny Allan 2 Comments

A Christmas 2022 message from Ronny

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

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 has been a challenging year, mainly because the pandemic had some impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal…

14Dec 2022 by Ronny Allan No Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3 Neuroendocrine Tumours (NETs). It is known that some glycolytic activity might be present in some well-differentiated NETs, in particular, grade 3 and the upper range of 2 Neuroendocrine…

02Dec 2022 by Ronny Allan No Comments

RonnyAllan.NET – Summary of November 2022

Awareness, Newsletters, Patient Advocacy

In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is the same for me!). The death of Wilko Johnson was unexpected, I tough he would be strumming his guitar for a bit longer. That was the top post by some margin. The 2nd top was surprisingly popular - empathy from an oncology nurse diagnosed with cancer. Only one old favourite made it into the top 5. Here are the 5 most read posts in November 2022. Click on the blue heading or the picture to read. My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko! - Ronny Allan - Living with Neuroendocrine Cancer Dear every cancer patient I ever took care of, I’m…

01Dec 2022 by Ronny Allan No Comments

In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

Clinical Trials and Research, Patient Advocacy

This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests to diagnose neuroendocrine cancer, time is of the essence. Now, thanks to researchers at the University of Alberta, a new medical imaging agent for PET scans promises to reduce wait times, while costing less to produce and possibly revealing more of some types of cancer tumors. Ralf Schirrmacher, an oncology imaging professor and member of the Cancer Research Institute of Northern Alberta, and his team at the Medical Isotope and Cyclotron Facility on the U of A's South Campus have been using a state-of-the-art cyclotron—a machine that already supplies the province with medical isotopes used in diagnostic scans—to create a new imaging compound that will…

27Nov 2022 by Ronny Allan 5 Comments

Incurable isn’t terminal

Patient Advocacy

OpinionWords are important I was diagnosed with stage IV cancer in 2010. OK, it wasn't a really aggressive type but it had caused a lot of damage. It's amazing to think that someone is still adding to their stage IV cancer story after 12 years. You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 12 years cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer.…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

Cancer is a genetic disorder. It happens when genes that manage cell activity mutate and create abnormal cells that divide and multiply, eventually disrupting how your body works. Medical researchers estimate 5% to 12% of all cancers are caused by inherited genetic mutations that you can’t control. More frequently, cancer happens as an acquired genetic mutation. Acquired genetic mutations happen over the course of your life. This is a very general description of the close relationships between genetics and cancer but I wanted to focus below on hereditary syndromes and genetic disorders related to Neuroendocrine Neoplasms. Definitions - the differences between Hereditary vs Familial vs Genetic Disorders I wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of…

18Nov 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, 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…

10Nov 2022 by Ronny Allan 2 Comments

Ask More, Assume Less

Awareness, Patient Advocacy

This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare. OK, that has been the case for some years but the recent data from NHS England cements this patently obvious truth. In England, it is now the 10th most prevalent cancer with a continually rising incidence – that has already seen 371% increase since 1995. Neuroendocrine Cancer UK is possibly the most progressive organisation within the INCA national collective, although I am seeing glimmers of change in some others. Unfortunately, many North American organizations/advocates appear to be going backward on this issue which I find bizarre. Certain European countries are also lagging. The phrase "Ask More and "Assume Less" is a great punchline and fits many of the…

Category: Patient Advocacy