Neuroendocrine - Ronny Allan - Living with Neuroendocrine Cancer

21Feb 2017 by Ronny Allan No Comments

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape. OncLive: Please highlight some of the main points from your…

27Jan 2017 by Ronny Allan 2 Comments

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer

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

25Jan 2017 by Ronny Allan 5 Comments

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction can be how the condition is…

17Jan 2017 by Ronny Allan 18 Comments

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, Treatment

A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of unknown primaries as it can give them clues to the possible location(s). Read more about these issues in my article "Needle in a Haystack".How does cancer spread? In addition to…

04Jan 2017 by Ronny Allan 4 Comments

Does your body now have an extra organ? The MESENTERY

Living with Neuroendocrine Cancer

One of the very first words I heard at diagnosis was the word "Mesentery". In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area for NET patients as many will have mesenteric involvement in their disease. I've read reports of a primary mesenteric tumour although it's mainly a site for secondary disease (metastasis). It's no surprise…

14Dec 2016 by Ronny Allan 4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

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

Updated 6th August 2023I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the way:Pheochromocytomas (Pheo for short)Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla…

30Nov 2016 by Ronny Allan 7 Comments

NET Syndromes – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' and not one of associated 'Neuroendocrine Tumours'. So which comes first? I guess it's the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios. Alternatively, a tumour…

18Nov 2016 by Ronny Allan 11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness in which many people survive. As survival rates increase, so too will the number of people who live with the legacy of…

16Nov 2016 by Ronny Allan 16 Comments

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.Sure, chemotherapy is not the nicest treatment to receive, and it does…

10Nov 2016 by Ronny Allan 5 Comments

One every 2 hours

Awareness

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now 4800 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of 9/100,000 (using the 2011 census for England of 53,000,000) The new figures do not include Lung Neuroendocrine Carcinomas (LCNEC and SCLC) - so it is understated. This would appear to debunk the myth that the condition is rare given that the…

05Nov 2016 by Ronny Allan 8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship

Content in my review queue (line). Background Scanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one. Even in the case of a story about late diagnosis or a misdiagnosis, I…

02Nov 2016 by Ronny Allan 9 Comments

Neuroendocrine Cancer – Exciting Times Ahead!

Inspiration, Survivorship, Treatment

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time. There's even more in the pipeline and I'm hoping to continue to bring you news of new stuff as I have been doing for the last year. Some of these new diagnostics and treatments will benefit eligible patients who are…

26Oct 2016 by Ronny Allan 7 Comments

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018. I'm quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site…

05Oct 2016 by Ronny Allan 20 Comments

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read more. I've mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant…

01Oct 2016 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Patient Power!

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

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people. However, the ratio of NET Cancer…

28Sep 2016 by Ronny Allan 23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy

BackgroundSome people on hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Cancer. Most of them will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. In a nutshell, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a physician's reaction to symptom presentation or maintenance/surveillance of an existing diagnosed condition. Sometimes, abnormal results will lead to more specialist tests.In cancer, these tests are frequently called 'markers'. Most tumour markers are made by normal cells as well as by cancer cells; however, they are produced at…

19Sep 2016 by Ronny Allan 14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="" align="aligncenter" width="460"] Stiff upper lip[/caption] It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in my case........ or was it my stiff upper lip? 20 months prior I had a colonoscopy after a short-term change of stool colour. Nothing…

08Sep 2016 by Ronny Allan 20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

picture shows an actual serotonin receptor BackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't really 100% tied down - the human body is extremely complex.You may see serotonin referred to as a 'neurotransmitter', a 'chemical' and a 'hormone' - this…

24Jun 2016 by Ronny Allan 14 Comments

What you don’t know might kill you

Awareness, Treatment

[caption id="attachment_16224" align="aligncenter" width="640"] Barbados heaven but I was oblivious to the fact that cancer was trying to kill me[/caption] A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area. I also had…

15Jun 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine Cancer

In a previous life, I used the term 'smoke and mirrors' quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of 'covertness' or a 'hidden agenda'. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I'm going with this line of thinking - if so, you worked out my hidden agenda! 'Smoke and Mirrors' is basically a term connected to the art of deception, a con trick, a way in through confusion and…

28May 2016 by Ronny Allan 8 Comments

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer

[gallery type="square" ids="16946,16947,16934,16935,16936,16937,16938,16939,16940,16941,16942,16943,16944,16945"]In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability.I was getting into some old habits…

09Mar 2016 by Ronny Allan 4 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer

This is an overview, if you require detail, try my more comprehensive post by clicking here or on the picture[caption id="attachment_38157" align="aligncenter" width="640"] Click on the picture to read more[/caption]OverviewWe all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects.MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is just another name for tumour and these can be non-cancerous (benign) or…

25Feb 2016 by Ronny Allan 4 Comments

Carcinoid – What’s in a name?

Awareness

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion (..... and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017. The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla…

28Jan 2016 by Ronny Allan 4 Comments

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

Treatment

[caption id="attachment_4852" align="alignleft" width="301"] Image with permission from Dr Sam Hare (www.lungdiagnosis.com)[/caption] A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages for those who have localised tumours less than 3cm and can't for whatever reason have surgery. I've checked with…

10Jan 2016 by Ronny Allan 5 Comments

Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

Treatment

[caption id="attachment_8939" align="aligncenter" width="500"] Click this picture to see how VDAs work[/caption] {NEW} added 4 June 2019 From ASCO 2019 conference extract: Of the 17 patients enrolled, 16 completed the 12-week trial. One patient was not evaluable due to noncompliance. No DLTs were observed at day 21. The highest dose of 10 mg daily oral everolimus in combination with weekly 60mg/m2 IV fosbretabulin is the RP2D. No grade 4 or 5 toxicities were noted. Grade 3 toxicities were seen in 5 patients; abdominal pain and hyperglycemia (not related to study drug), fatigue (possibly related), decreased lymphocyte count and anemia (related). Several patients had delay in treatment due to grade 2 AE’s (GI symptoms, rash, thrombocytopenia) and one patient was unable to complete treatment due to pneumonitis. All evaluable patients except…

01Jan 2016 by Ronny Allan No Comments

NET Cancer Blog – 2015 in review

General

The WordPress.com stats team have prepared a 2015 annual report for my blog. Special thanks to those who got a mention! Why not review my posts which received a 2015 Mention in Despatches ? Here's an excerpt: Madison Square Garden can seat 20,000 people for a concert. This blog was viewed about 62,000 times in 2015. If it were a concert at Madison Square Garden, it would take about 3 sold-out performances for that many people to see it. Click here to see the complete report.

29Dec 2015 by Ronny Allan 2 Comments

Neuroendocrine Cancer – a Doctor’s experience

General

[caption id="attachment_4617" align="alignleft" width="225"] Dr Michael Richardson - NET Cancer Patient[/caption] UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now. I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening. In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to…

09Dec 2015 by Ronny Allan 22 Comments

Neuroendocrine Cancer: My experience with Lanreotide (Somatuline Autogel/Depot)

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

On 9th December 2021, I celebrated 11 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot). Technically this is a hormone therapy (it's not chemo).Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life. Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects. Check out…

16Nov 2015 by Ronny Allan 7 Comments

Neuroendocrine Cancer – the devil is in the detail

General

Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day.Like a lot of people, Nick's life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend.He assumes the post vacated by James Naughtie, an extremely hard act to follow - a man who would frequently sink his teeth into a politician's leg and not let go until he got an answer - or at…

05Oct 2015 by Ronny Allan 7 Comments

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

BackgroundNeuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…

04Sep 2015 by Ronny Allan 2 Comments

Screw that diagnosis and get on with it!

General

[caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] Every now and then I see a positive story during my travels around the internet. When I saw this one from K**** in Pennsylvania, I had to share. If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43. I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…

27Aug 2015 by Ronny Allan 22 Comments

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition

Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues. It is also a key factor in maintaining a decent quality of life and for most countries without adequate NET Specialist Dietitian support, it remains an unmet need. In this article, I'm discussing the use of probiotics to combat the potential issue of small intestine bacterial overgrowth (SIBO) in Neuroendocrine Tumours. When I first indicated this nutrition series was under construction, a few people got quite excited anticipating me to produce advice on what to eat. However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) and that anything I said would only really be of help to those…

18Aug 2015 by Ronny Allan 35 Comments

Neuroendocrine…..the little suckers get everywhere!

Awareness

One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'. The response was amazing and on twitter it was one of Macmillan's most retweeted posts over that period. The Macmillan Facebook post was also very popular and still rising with around 500 likes and around 40 shares so far. There are some great comments on…

30Jul 2015 by Ronny Allan 8 Comments

‘Chinese Dumplings’ and Neuroendocrine Cancer

Treatment

One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology last month (June 2015). I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.This is an article about something generally described as "Intra-operative Chemotherapy", i.e. the administration of chemo during surgery. This isn't any old article - this is written by someone who is very well-known in Neuroendocrine Cancer circles - Dr. Yi-Zarn Wang.March 2022: Note Dr Wang has a new post.“I am now in Permian Basin-Odessa Midland Texas as the new Program Director of a new general surgery residency program. I have officially joined the faculty of Texas Tech University Health Sciences Center on…

26Jul 2015 by Ronny Allan 48 Comments

I’m still here

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

I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do.There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way - and that's perfectly understandable.The 5-year milestone was significant, I…

14Jul 2015 by Ronny Allan 20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis…

07Jul 2015 by Ronny Allan 30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world. Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…

30Jun 2015 by Ronny Allan 29 Comments

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and Nutrition

Always speak to your specialist before taking vitamin and mineral supplements Featuring Tara Whyand Vitamin deficiency is common in the general population so your issue may not be related to NET. But read on to learn the risks for NET patients. Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed. This is one of the key reasons I believe there is a gap…

23Jun 2015 by Ronny Allan 4 Comments

Surgery is risky but so is driving a car

Survivorship, Treatment

I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs).To some extent, these debates continue, particularly for pancreatic NETs. Surgery for certain NETs in certain scenarios is a controversial issue for NETs - as outlined in this article - to cut or not to cut. I've…

02Jun 2015 by Ronny Allan 25 Comments

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Neuroendocrine Tumours secreting excess amounts of serotonin, can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Hedinger Syndrome (often known as Carcinoid Heart Disease (CHD)). However, very late diagnoses can present with CHD already in place.Excess serotonin, a hormone released by NETs into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’. It's very similar to the reasons for mesenteric and peritoneal fibrosis…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

27Apr 2015 by Ronny Allan 11 Comments

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer. They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast…

12Dec 2014 by Ronny Allan 9 Comments

Chocolate – the NET effect

Diet and Nutrition, Humour, The NET Effect Series

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a large person, I'm small 'framed' and although I was starting…

05Dec 2014 by Ronny Allan No Comments

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer). Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient. For me, this can be attributed to a number of…

10Nov 2014 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Inspiration, Patient Advocacy, Survivorship

Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…

03Nov 2014 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of…

16Oct 2014 by Ronny Allan 14 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy

Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are. Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…

24May 2014 by Ronny Allan 7 Comments

My right-hand woman – Chris

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

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress. My son & daughter's families have all been there for me and although my 4 grandsons don't fully understand the situation, their presence in my life is a great tonic.…

20May 2014 by Ronny Allan 1 Comment

Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment

I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog. I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…

13May 2014 by Ronny Allan 3 Comments

North of the wall is a dangerous place – you must never go there!

Living with Neuroendocrine Cancer

There was a 60 minute silence last night as another episode of Game of Thrones was aired. Not a Facebook post or tweet in sight. This has to be 'up there' in a list of the best TV series ever? Don't know about you but I'm sometimes confused about who is who and how they are related and/or connected! (see useful chart at the bottom of this post) Chris and I love the introduction bit. She likes the music, I like the geography. There are some obvious correlations there, e.g. 'The Wall' is meant to relate to Hadrian's Wall with those horrible barbarian Scots to the north :-) Thank God Hadrian's Wall and the climate in particular, isn't as bad as portrayed on GOT! I did contemplate using 'trousers' as…

Tag: Neuroendocrine