Neuroendocrine Neoplasms – High grade



High Grade – the forgotten patient group?

When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it’s clear that the focus is on the term “Neuroendocrine Tumours” or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term “NET” in their naming.  I too am guilty of having a large Facebook site falling into this category.  It’s little wonder that those with high grade disease can often feel like the forgotten patient group.  Clearly all the aforementioned organisations support all patients regardless of grade, but it’s true to say that the naming and general use of terminology continues to fall behind. It’s also true that the term NET remains applicable to the majority of patients and that many use it as a convenience when they actually mean all types including Neuroendocrine Carcinoma. Nonetheless, context remains an important part of overall understanding and inclusivity – words and acronyms matter.

However, High grade or Grade 3 is no longer just Neuroendocrine Carcinoma (NEC).  Things have changed since 2017.

What are Neuroendocrine Neoplasms?

Neuroendocrine neoplasms (NENs) are without doubt a heterogeneous (i.e. diverse) bunch of tumours with a common phenotype (i.e. the physical appearance or biochemical characteristic).  However, there are two fundamentally different groups of NENs: well-differentiated, low-proliferating NENs, called neuroendocrine tumours (NETs), and poorly differentiated, highly proliferating NENs, called neuroendocrine carcinomas (NECs).  The difference between well and poorly differentiated has been described as a ‘dichotomy’, most likely due to the origin from different neuroendocrine progenitor cells (i.e. source cells). Should the term Neuroendocrine Neoplasm be used more?  Yes, probably. But should we perhaps also ask if ENETS and NANETS will change their names to ENENS and NANENS?

This revised classification is not recent as many are currently suggesting.  These changes were covered in my Staging and Grading article produced in early 2017 and confirmed Neuroendocrine Neoplasms (or NENs) was the overarching term for all types of neuroendocrine disease.  See graphic below.

Traditionally, any proliferation score over 20% on the Ki-67 proliferation index (or over 20 mitoses/10 HPF on the Mitotic Index) would have been deemed a Neuroendocrine Carcinoma.  However, in the pancreas, NETs and NECs may overlap in their proliferation index, making the distinction between them difficult and leading to treatment uncertainties.

In 2017, the Endocrine ‘Blue Book’ of cancer classification systems introduced a new pancreatic NET category based on a Grade 3 tumour which is well differentiated (i.e. cancer cells look more like normal cells and tend to grow and spread more slowly).  While all classifications for all NENs recognise the existence of the two major groups (NET and NEC), there are proposals to develop common NEN classification across all the ‘Blue Books’ and future versions will reflect these changes. The most interesting change will be in the Lung classification because high grade NENs can be small cell or large cell and it’s probably the most controversial grouping.

Interestingly, ENETS guidelines already use the term across the board in their 2016 series (i.e. in advance of the 2017 changes).  These changes are part influenced by the results of the NORDIC NEC study which showed that although patients with a Ki67 <55% were less responsive to platinum-based chemotherapy (i.e. drug names ending in ‘platin’ such as Cisplatin, Carboplatin, Oxaliplatin), they had a longer survival, and concluded that not all NEC should be considered as one single disease entity.  Also worth noting that the NORDIC NEC study covered many different areas of the anatomy, not just the pancreas. Some of the rationale for the division of grade 3 into well differentiated NETs and poorly differentiated carcnomas is that some grade 3 tumours which are classified into this category according to the Ki67 index percentage, have been recognised to behave more like grade 2 NETs rather than aggressive carcinomas. The inference is that there could be treatment and prognostic significance if a patient is a Grade 3 NET.

MANEC vs MiNEN

Added for completeness.  This mixed and rare neoplasm type has traditionally been related to NEC but in 2017 the nomenclature change to a new term was necessary to reflect the fact that some of the tumours involved were not carcinomas or adenocarcinomas but rather were well differentiated tumours or even adenomas (i.e. benign). Previously known as Mixed AdenoNeuroendocrine Carcinoma (MANEC), they were renamed to Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN).

MiNEN are neoplasms with two distinct neuroendocrine and non-neuroendocrine cell populations. They can be morphologically classified into three entities: collision, composite, and amphicrine MiNEN. Currently, both components composing a MiNEN must represent at least 30% of the whole tumour.  Diagnosis of MiNEN is usually facilitated by the presence of at least one well-differentiated component which may be the Neuroendocrine or Non-Neuroendocrine component. However, the two components may be difficult to identify with conventional morphological techniques, particularly when they are poorly differentiated, and their identification may require additional immunohistochemical techniques. MiNEN usually originate from organs that contain neuroendocrine cells and in which “classical” NENs are known to develop, such as pancreas, appendix, colon, and to a lesser degree small intestine. Other locations in my source document includes Oesophagus, Stomach, Bilary Tract and Gallbladder, Duodenum and Ampulla of Vater and Rectum.

NEC vs NET

Having researched widely, I believe there are 8 key differences between NET and NEC:

      1. Grade – NEC is only Grade 3, NETs can be Grade 1, 2 or 3.
      2. Differentiation – all NETs are well differentiated, NECs are poorly differentiated.  Important difference at Grade 3.
      3. Aggressiveness – Most NETs tend to be indolent or slow growing while NECs tend to be aggressive and faster growing. However, Ki67 and/or mitotic count is an aggressiveness measurement tool.  Genetic profiles can also be a guide but this is beyond the purposes of this article but may be explored in subsequent parts.  It follows that NECs normally have a worse prognosis in comparison to NETs.
      4. Hormone Secretion – NETs can produce peptide hormones that may be associated with hormonal syndromes.  NECs usually fail to express hormones or produce hormonal syndromes.
      5. Somatostatin Receptors – A NET is much more likely to express somatostatin receptors which can influence treatments such as somatostatin analogues and peptide receptor radiotherapy (PRRT)
      6. Hereditary Syndromes – NETs are much more likely to be associated with hereditary syndromes such as Multiple Endocrine Neoplasia (MEN).
      7. Platinum Based Chemotherapy – NETs are less likely to show a good response to platinum based chemotherapy which can often be the first line treatment for NEC.
      8. Primary Locations – can be vastly different in terms of commonality and therefore provide clues to investigators. Common locations for NEC include: Lung, Esophagus, Colon, Urogential Organs and Skin –  with the exception of Lung, these are very rare locations in NETs.  Conversely, rare/very rare locations for NEC but common in NET include: Rectal, Small Intestine, Appendix, Stomach, Pancreas.

Summary

I intend to cover more on Grade 3 tumours going forward and a ‘Part 2’ article will follow covering treatment differences, genetic profiles and unmet needs.

In addition to my own knowledge gained over the years of researching and writing, the following resources were key in establishing the facts used in compiling this article:

1. Sorbye H, Welin S, Langer SW, Vestermark LW, Holt N, Osterlund P, et al: Predictive and prognostic factors for treatment and survival
in 305 patients with advanced gastrointestinal neuroendocrine carcinoma (WHO G3): the NORDIC NEC study. Ann Oncol 2013; 24: 152–160

2. de Mestier L, Cros J, Neuzillet C, Hentic O, Egal A, Muller N, Bouché O, Cadiot G, Ruszniewski P, Couvelard A, Hammel P: Digestive System Mixed Neuroendocrine-Non-Neuroendocrine Neoplasms. Neuroendocrinology 2017;105:412-425. doi: 10.1159/000475527

3. Koppel G: Neuroendocrine Neoplasms: Dichotomy, Origin and Classifications. Visc Med 2017;33:324-330. doi: 10.1159/000481390

4. Rindi G, Klimstra DS, Abedi-Ardekani B, et al. A common classification framework for neuroendocrine neoplasms: an International Agency for Research on Cancer (IARC) and World Health Organization (WHO) expert consensus proposal. Mod Pathol. 2018;31(12):1770–1786. doi:10.1038/s41379-018-0110-y

Thanks for reading

Ronny

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Rosacea – the NET Effect


Rosacea The NET Effect

Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today.  It normally starts with a stinging feeling, an indication I’m about to experience some sort of inflammation. What eventually happens is something which looks like a ‘whitehead’ which I now know to be a ‘pustule’.  Sometimes there are multiples and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering but they tend to leave reddish marks which eventually fade.  Very infrequently, these pustules would appear on my chin.  After 18 years of the issue, my nose is slightly discoloured and more reddish than the rest of my face.

Shortly after I started experiencing this issue, a doctor diagnosed me with ‘mild rosacea‘. If this is a correct diagnosis, then I would appear to have Subtype 2 or papulopustular (acne) rosacea (see breakdown of types below).  I also have the minor irritation of a recurrent mild eczema inside my right outer ear which has run parallel to this issue (…. spookily).

For around two years, I was treated with a mixture of low dose oral antibiotics (tetracycline) and a skin medication known as metronidazole. This did clear up the issue but it always returned and I stopped the medication opting instead for a commercial product which I find works better.  It doesn’t clear it 100% but I’ve learned to live with it and it is a long-term chronic condition.  I looked at many Rosacea sites online and none of the pictures seemed to apply to me and I agree with my diagnosing doctor in terms of a ‘mild’ version.

I worked out early on that the triggers were stress, when ‘run down’, and too long in the sun. There were possibly others.  Stress was part and parcel of the work I was involved in and it was at a time when I left my life in the military after 29 years and started a second career in industry (often I think in hindsight, I may have been overly stressed at the life change without realising it).  Without any medical input, I decided to try to make sure I got sufficient vitamins and I now appear to get less coughs and colds then I used to.  I now try to stay out of the direct sun.  Other common triggers are listed on reputable sites andinclude alcohol, hot and cold weather, exercise, hot baths and spicy foods.

What is Rosacea

A common skin condition, usually occurring on the face, which predominantly affects fair-skinned but may affect all skin types in people aged 40 to 60 years old. It is more common in women but when affecting men, it may be more severe.  It is a chronic condition, and can persist for a long time and, in any individual, the severity tends to fluctuate. Rosacea tends to affect the cheeks, forehead, chin and nose, and is characterised by persistent redness caused by dilated blood vessels, small bumps and pus-filled spots similar to acne. There may also be uncomfortable inflammation of the surface of the eyes and eyelids.  I found this site to be a very useful Rosacea reference.

Rosacea is sometimes classified into 4 subtypes that may overlap:

  • Subtype one, known as erythematotelangiectatic rosacea (ETR), is associated with facial redness, flushing, and visible blood vessels.
  • Subtype two, papulopustular (or acne) rosacea, is associated with acne-like breakouts, and often affects middle-aged women.
  • Subtype three, known as rhinophyma, is a rare form associated with thickening of the skin on your nose. It usually affects men and is often accompanied by another subtype of rosacea.
  • Subtype four is known as ocular rosacea, and its symptoms are centred on the eye area.

What causes rosacea?  

The cause of rosacea is not fully understood. Your genetics, immune system factors, and environmental factors may all play a part. Factors that trigger rosacea cause the blood vessels in the skin of the face to enlarge (dilate). The theory that rosacea is due to bacteria on the skin or in the gut has not been proven. However, antibiotics have proven helpful to treat rosacea. This is because of their anti-inflammatory effect. Rosacea is not contagious.

Why is rosacea sometimes linked to NETs?

On certain sites and in certain texts about NETs, you will see mention of Rosacea, clearly as a misdiagnosis of someone who presents with flushing.  I started experiencing the sensation of NET related flushing in late 2009/early 2010 and I can honestly say this was a totally different experience to what I had with my mild rosacea. However, I don’t have the ‘blushing’ type of rosacea and I can see the presentational similarities.

Another issue commonly reported in both conditions is small visible blood vessels on the face, known formally as Telangiectasia or informally as ‘spider veins’ or ‘broken capillary veins’. This is quite common with erythematotelangiectatic rosacea (subtype 1).  I actually have at least two of these showing and this appears to be something I’ve only noticed since NET diagnosis and only in the last few years.  Interesting it says this is something normally caused by “chronic flushing” but I wouldn’t have labelled by flushing in that way. I have not felt any flushing since late 2010 after surgery and commencement of long acting somatostatin analogues.  Unless there has been something ‘sub-clinical’ going on, I’ve veered my minor issue towards long-term but mild rosacea as the cause rather than NETs.  Telangiectasia is mentioned in many NET texts including my own article “Neuroendocrine Cancer: A Witch’s Brew of Signs and Symptoms”

Histamine if often linked to both conditions.  Read about NET related histamine here and Rosacea histamine issues here.

Summary

I’ll be honest with you, I’m actually not 100% convinced I have rosacea as it has similarities with many other skin conditions. In fact, skin issues are pretty common with NET patients, some are actually directly linked to NETs including Merkel Cell Carcinoma,  pellagra (linked to Carcinoid Syndrome) and Sweet’s syndrome (linked to Glucagonoma).  In addition, many people develop skin issues as a side effect of treatment.  Read more here.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

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Neuroendocrine Cancer: No one gets it until they get it


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’, they have real difficultly understanding ‘Neuroendocrine‘.  Despite how hard I try, I can see that some of them just don’t get it!

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 through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description, in addition to creating a disadvantage of awareness opportunities because of the use of incorrect cancer types, clearly many doctors and media organisations don’t ‘get it’ either!

Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex.  “How can it be so difficult” many of them ask.

If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing.  Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark.  The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, you either die or live.  Simple isn’t it?

One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters.    They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.

Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease.  I also intend to continue to help with the undiagnosed (some of these guys probably do ‘get it’ but just not yet formally ‘got it’).  I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.

No one gets it until they get it. It shouldn’t be that way. 

Thanks for reading

Ronny

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From dying to living, to hell and back


I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was “The shock effect never wears off“.  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases).

This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as ‘Patient E’. I just felt that someone somewhere might learn something very important.

The Story of ‘Patient E’

In December 2018, Patient E was told ‘Stage 4 Pancreatic Cancer’ and had 10 months to live. Chemo was to be attempted in January in an effort to extend life but in the meantime was told to spend Christmas for the last time with the family, a spouse and 3 young children.   On 2nd January, Patient E was then told (with apologies) it was actually a ‘Neuroendocrine Tumour with a pancreatic primary’.  The only good thing about this story so far, is that they told the children nothing over Christmas. “Why worry happy little people” was the bit of the story which brought out my tears.

Initially I was quite angry this could happen to anyone but I was then calmed by Patient E who now had fresh hope and optimism, perhaps realising that there were possibilities for many more years with the family.

The Story of ‘Patient F’

In March of 2017 I was having bad indigestion and since I already had two cardiac stents went to a local hospital to make sure I wasn’t having cardiac issues. They found a mass on the pancreas and metastasis to the liver. I saw a surgeon a couple of days later and he told me it was inoperable, adding that I should pretty much get my affairs in order. A biopsy was then carried out confirming it was neuroendocrine and we were thrilled. I then received a call a couple of days later, saying they had it wrong, it was not neuroendocrine and they wanted to start chemo ASAP! I then received a further call a few days later, saying they were not sure and needed to do more tests. We then went a different hospital where two different surgeons said that it was inoperable. One oncologist said she did not know; and another thought it might be a combination of the two. At this point. they sent my slides to a NET specialist hospital for their opinion, coincidentally we had already scheduled an appointment there. When we walked into this appointment, the NET Specialist greeted us with a big smile and hug, saying that that both she and the surgeon had reviewed my slides; and that it was definitely neuroendocrine – they could operate. Two weeks later the surgeon removed the mass from my pancreas and my spleen. He said that it was probably there for years and looked like it was ready to burst. I was unbelievably lucky.

So why do these things happen?  Apart from the serious communications lapse by the hospitals, this is another example of the problems we as a community face with the anatomical approach many doctors take with cancer, with some even describing a pancreatic Neuroendocrine Tumour as a type of Pancreatic Cancer (this happens with other parts of the anatomy too).

Patients E and F are not alone, I once wrote a story about rock star Wilko Johnson (of Dr Feelgood fame) who was given a very similar prognosis.  However, Wilko was in the later stages of his life and decided instead of undergoing gruelling chemotherapy, he would forego any treatment and tour with his band in the final 12 months of his life and …….. make an album with Roger Daltrey of The Who. It wasn’t until someone enquired why he wasn’t dead after 12 months, that they re-checked and changed the diagnosis to Neuroendocrine Tumour with a pancreatic primary.  Read the whole story here.

I wonder how many other times this has happened.

Neuroendocrine Tumours with a pancreatic primary (pNET) is a totally different cancer to Pancreatic Cancer.  With Pancreatic Cancer, most people die, quite the opposite with pNETs where most people live.  Read more about the main differences here.

I’m grateful to Patients E and F for contacting me to let me know that my blog and my other support sites have been helpful in the transition from despair to hope since finding out the correct diagnosis. I do hope Patients E and F will keep me updated.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Proton Pump Inhibitors – the NET Effect


Proton pump inhibitors (PPIs) reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid related conditions such as:

  • Esophageal duodenal and stomach ulcers
  • NSAID-associated ulcer
  • Ulcers
  • Gastroesophageal reflux disease (GERD)
  • Zollinger-Ellison Syndrome – ZES (note this is a syndrome associated with a functioning duodenal or pancreatic NET known as a Gastrinoma)
  • They also are used in combination with antibiotics for eradicating Helicobacter pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum for eradicating H. pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum.

Although this should not be considered a full list applicable to all countries, the drugs tend to be prescribed or purchased under the following names:

  • Aspirin and Omeprazole (Yosprala)
  • Dexlansoprazole (Dexilent, Dexilent Solutab)
  • Esomeprazole (Nexium, Nexium IV, Nexium 24 HR)
  • Esomeprazole magnesium/naproxen (Vimovo)
  • Lansoprazole (Prevacid, Prevacid IV, Prevacid 24-Hour, Zoton FasTab)
  • Omeprazole (Prilosec, Prilosec OTC, Losec, Mepradec)
  • Omeprazole and sodium bicarbonate (Zegerid, Zegerid OTC)
  • Pantoprazole (Protonix, Pantoloc Control)
  • Rabeprazole (Aciphex, Aciphex Sprinkle, Pariet)

PPIs have revolutionized the management of acid-related diseases and there is evidence supporting their superior efficacy and overall safety profile. Unfortunately, it would appear this has possibly led to their overuse and inappropriate use. When used appropriately, the overall benefits significantly outweigh the potential risks in most patients.

One US pharmacist magazine has stated that almost half of all patients taking a PPI do not have a clear indication. It follows that PPIs may not be the appropriate treatment for many people. The American Gastro Journal nicely covers this issue – click here.

What is the connection with NETs?

Millions of people will have been prescribed these drugs for the various reasons listed above and as I said above quoting from a reputable US Pharmacist magazine, perhaps many do not have a clear indication for their use. So this issue is much wider than NETs.

Above, you can see a direct link to duodenal/pancreatic NET syndrome – ZES. However, there is also a known link between the use of PPIs and the effect on the Chromogranin A blood test, the most common tumour marker used in the diagnosis and surveillance of many types of NET. Several studies have concluded that PPIs falsely elevate Chromogranin A – read more here.

Any other risks of using PPIs?

There are several well-known risks of using PPIs in the long-term. However, many drugs have side effects, often the risks of not taking a particular drug can be outweighed by taking it. I will not comment further but leave you with some references to read yourself:

1. From the UK National Health Service (NHS). They took a balanced view adding the risk element I described above. Importantly they stated that PPIs are not usually intended to be taken long-term. Read more here. The British Medical Journal (BMJ) published the study referred to by the NHS here.

2. The NHS also published an article based on the results of a US study. Again, they indicated the study had similar limitations to the one above. Read more here (links to the study contained within).

3. There are literally dozens of similar articles but most seem to point to these two studies. However, it should also be noted that the US FDA has issued safety warnings about long-term use of PPIs. This is covered in the aforementioned US Pharmacist magazine article here.

Are there alternatives to PPIs?

Firstly, you should NEVER stop taking PPIs without speaking to the doctor who prescribed them.

There’s a class of drugs known as Histamine H2 Receptor Antagonists (H2RA) that reduce the amount of acid produced by the cells in the lining of the stomach. They are also commonly called H2 blockers. They include Cimetidine (Tagamet, Tagamet HB), Famotidine (Pepcid, Pepcid AC), Nizatidine (Axid) and Ranitidine (Zantac). Brand names may differ from country to country. From what I read, they are not as powerful as PPIs but for some people they may prove adequate. Read more about H2 blockers here.

So I can just stop taking PPIs and start taking H2 blockers?

NO. As I said above, you should never discontinue a prescription for PPI without talking to your doctor. However …. it’s not common knowledge that suddenly stopping PPIs is not a good idea – you must gradually reduce (i.e. taper off).

Why taper? PPIs block the production of acid in your stomach which can help with the symptoms but that also turns on the release of gastrin. This is not ideal for two reasons according to NOLANETS:

  1. When you try to get off of PPI, the gastrin stimulates acid production and stays elevated, potentially for several months (depending on how long you were on the PPIs). This makes your reflux worse than before and makes getting off of this medication very difficult. Gastrin also stimulates Chromogranin A thus why this can be elevated in patients who have been taking PPIs.
  2. Gastrin also acts like a growth factor and stimulates the growth of ECL cells (enterochromaffin like cells). Clearly this does not happen to everyone on PPIs. However, and as per the NHS advice above, PPIs should not be considered a long-term solution except for conditions for which they are clinically indicated (e.g. Barrett’s oesophagus, Gastrinoma (Zollinger Ellison Syndrome).

What are NET Specialists saying about this?

The best source of information on this seems to be in two main areas:

1. One is NOLANETS (Dr Eugene Woltering et al) who appear to be leading the way on identifying those who may have a clinical indication for use of H2 blockers rather than PPI and this NET Specialist organisation has produced a sheet showing how to taper people off the drug and onto the less risky H2 blockers. Read the NOLANETS “Get off PPIs” Sheet by clicking here. They state that PPI use increases circulating gastrin which in turn increases the amount of acid in the stomach. The increase in gastrin also stimulates the enterochromaffin like cells (ECL) of the stomach to produce Chromogranin A and this explains why it can be elevated in PPI users. The US Pharmacy magazine quoted above, appears to confirm this thinking.

2. The European NET Society (ENETS) discusses the issue in their guidelines but only in relation to Zollinger-Ellison Syndrome (ZES). This is a direct quote from ENETS 2016 Guidance – “The widespread use of PPIs is a major problem for the diagnosis of ZES because these drugs have an extended duration of action (up to one week), they cause hypergastrinemia in 80-100% of all normal subjects, and can confound the diagnosis. Furthermore, if PPIs are abruptly stopped in a true ZES patient, anti-peptic complications can rapidly develop, and therefore some expert groups have recently recommended that the diagnosis of ZES should be established without stopping the PPIs or by attempting to taper the dose. Unfortunately, as suggested in a number of recent papers, in most patients, the diagnosis cannot be easily established without an interruption of the PPIs. Furthermore, a secretin test cannot be used while a patient is taking PPIs because it can result in a false positive test. Other tumour markers such as serum chromogranin A were found to be not reliable for the diagnosis of ZES patients, as up to 30% have normal plasma chromogranin A levels. PPIs also lead to increased chromogranin A levels on their own. It is therefore recommended that if the diagnosis is unclear, the patient should be referred to a centre of excellence and if this is not possible, PPI withdrawal should be cautiously performed (in an asymptomatic patients with no active acid-peptic disease or damage) and with adequate cover by H2 blockers and careful patient monitoring”.

PPIs and PERT

I have anecdotal evidence that people are being prescribed PPIs alongside Pancreatic Enzymes Replacement Therapy (e.g. Creon, Nutrizym etc). While most types of PERT are gastro-resistant, a high acid environment may impair their efficacy. The rationale behind using PPI (or H2 blocker) is to decrease the acid level and allow the PERT to work better. Given the research behind this article, I would certainly challenge the use of PPI alongside long-term use of PERT.

Summary

The aim of this article is not to scare anyone, I’ve been careful with the sources, quotes and facts. Like anything in life (including the medical world), there are risks and knowing about them allows us to manage these risks in conjunction with our doctors and healthcare specialists. If you are concerned about anything you find inside this article, I suggest you speak directly to your doctor/specialist for advice.

Personally speaking, I would like to see more from the NET Specialist community on this issue.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Clinical Trial: Lenvatinib Efficacy in Metastatic Neuroendocrine Tumors (TALENT)



Lenvatinib has just completed a Phase 2 trial in Gastrointestinal (GI) and Pancreatic Neuroendocrine Tumours.  The trial was sponsored by Grupo Espanol de Tumores Neuroendocrinos (Spanish NET scientific organisation) and the manufacturers.  A European venture with sites in Austria, Italy, Spain, UK.   Headline: The responses are better than Everolimus (Afinitor) and Sunitinib (Sutent).

What is Lenvatinib?

It is a type of targeted therapy known as a multikinase inhibitor. The brand name is ‘LENVIMA‘. These work by inhibiting multiple intracellular and cell surface kinases, some of which are implicated in tumour growth and metastatic progression of cancer, thus decreasing tumour growth and replication. A range of receptor kinases are involved in these processes, including vascular endothelial growth factor receptor (VEGFR), platelet-derived growth factor receptor (PDGFR), stem cell factor (c-KIT), Flt3, fibroblast growth factor receptor (FGFR), which can be hyperactivated during tumour formation and progression.  Tumour growth may be prevented by inhibiting the action of these hyperactivated receptor kinases, and as tumour progression usually involves the action of multiple kinases rather than just one, it is logical to target multiple kinases.

The Lenvantinib mechanism of action is similar to targeted therapy drugs already in use (or in trial) for Neuroendocrine Tumours:

  • Sunitinib (Sutent) – a targeted therapy receptor protein-tyrosine kinase inhibitor.  It inhibits the actions of vascular endothelial growth factor (VEGF) and is an angiogenesis inhibitor (i.e. the development of blood vessels to supply the tumour with nutrients, which they need to grow).  It is a mutlikinase in inhibitor.
  • Everolimus (Afinitor) – a targeted therapy kinase inhibitor that inhibits mammalian target of rapamycin (mTor) kinase, an enzyme required for cell growth and survival. By blocking this enzyme, the medication prevents cell division and, in turn, tumor growth. The medication can also interrupt angiogenesis.
  • Cabozantinib, an oral potent inhibitor of vascular endothelial growth factor receptor 2, MET, and AXL, and currently on trial for Neuroendocrine Cancer.  Click here.

Multikinase inhibitors such as Lenvatinib, may be used to treat advanced kidney cancer as well as other specific types of cancer (in my research I also noted that in addition to kidney cancer, the drug is already approved for liver and thyroid cancers).  Worth also noting that the 3 examples of targeted therapy above are not just in use/in trial for Neuroendocrine Cancer, they are also in use/in trial for others including Renal (Kidney) Cancer, Breast Cancer.  Often more than one single kinase inhibitor can be given as a combo treatment, perhaps in sequence, to tackle multi kinases.

Anything special about Lenvatinib for Neuroendocrine Cancer? 

Recent reports from oncology conferences indicate that Lenvatinib showed significant antitumor activity and a favourable toxicity profile in progressive advanced NETs. This is the highest reported ORR with a targeted agent, confirmed by central radiology assessment in pancreatic NETs and Gastrointestinal (GI) NETs with promising progression free survival (PFS) in a pre-treated population; further evaluation is warranted.

Adverse events were mild to moderate in 90% of patients, the most frequent being fatigue, diarrhea and hypertension.

Lenvatinib showed the highest reported overall response rate (ORR) by central radiology assessment with a targeted agent in advanced NETs:

Average 29.2%

pNETs: 40.4% (95% CI 27.3-54.9),

GI NETs: 18.5% (95% CI 9.7-31.9.

Worth noting that Everolimus and Sunitinib were approved with ORRs much less than these figures.

What’s next? 

Given the responses in comparison to other approved targeted agents, a phase 3 trial should be anticipated.  Studies are “currently ongoing” and “further evaluation warranted”.  I will keep this article live to provide updates.

New Trial using Lenvatinib and Everolimus in Treating Patients With Advanced, Unresectable Neuroendocrine Tumors

Under ClinicalTrials.gov Identifier: NCT03950609, there is a trial being setup at MD Anderson in Texas USA.  Use of a combo of Lenvatinib along with Everolimus (Afinitor) in treating patients with advanced, unresectable Neuroendocrine Tumors (the word ‘Carcinoid’ is used in the trial documentation).

Reference material used in the compilation of this article:

1. Annals of Oncology – Efficacy of Lenvatinib in patients with advanced pancreatic (panNETs) and gastrointestinal (giNETs) grade 1/2 (G1/G2) neuroendocrine tumors: Results of the international phase II TALENT trial (GETNE 1509) 23 Oct 2018 –  click here.

2. ESMO Congress 2018 – Efficacy of Lenvatinib in patients with advanced pancreatic (panNETs) and gastrointestinal (giNETs) grade 1/2 (G1/G2) neuroendocrine tumors – click here

3. Prime Oncology Slide Show – click here (useful)

4. Clinical Trials Document NCT02678780 – click here

5. Manufactures website – click here.

6.  Clinical Trials Document NCT03950609 for the trial of combo treatment Lenvatinib and Everolimus.  Click here.   As at 15 May 2019, the trial was not recruiting but see document for contact details, quite often these documents can be behind in updating. Trial start date recorded as 30 June 2019.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!



patients included

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Clinical Trial: Intra-arterial Lu177 (PRRT) for Neuroendocrine Cancer liver metastases (LUTIA)

The treatment of liver metastasis is a common approach following a metastatic diagnosis or discovery of liver metastasis downstream via re-staging. In addition to surgery, there are several liver directed therapies available via embolization techniques. This comes in several flavours:

1. Bland liver embolization – a minimally invasive technique which simply blocks the blood supply to the liver tumours in an attempt to reduce or kill those tumours. Sometimes called Hepatic Arterial Embolization or HAE.

2. Chemotherapy liver embolization – as above but adds in some cytotoxic chemo to the mix. Sometimes called Trans Arterial Chemo Embolization or TACE.

3. Radioembolization is a minimally invasive procedure that combines embolization and radiation therapy to treat liver cancer. Tiny glass or resin beads filled with the radioactive isotope yttrium Y-90 are placed inside the blood vessels that feed a tumour. Often known as Sirtex or SIR-Spheres.

Of course systemic treatment is body-wide and so includes the liver as a target. Systemic treatment includes (but is not limited to) Lu177 (PRRT), Chemotherapy, Targeted Therapies such as Everolimus (Afinitor) and Sunitinib (Sutent). Also included are somatostatin analogues such as Lanreotide and Octreotide.

Sometimes systemic treatment is not fully effective on all metastases and although PRRT response rates are good, often patients still live with the burden of remnant liver tumours once therapy is finished.

Doctors in the Netherlands are looking at a trial using Lu177 (PRRT) as a liver directed therapy. The trial is based at 3 sites in the Netherlands and is titled: Intra-arterial Lutetium-177-dotatate for Treatment of Patients With Neuro-endocrine Tumor Liver Metastases (LUTIA). You can read more about the trial by clicking here.

In a clinical trial in USA, the NET Research Foundation is funding similar research at the UCSF Helen Diller Cancer Center led by Dr Tom Hope using Y90 intra-arterial for liver metastasis. See the NET RF’s information here and read more about the clinical trial by clicking here

I will keep this article open for any updates.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

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Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

THUMBNAIL_CarTcell.jpg

PDR001 (anti-PD-1) is an investigational immunotherapy being developed by Novartis to treat both solid tumors and lymphomas (cancers of the blood).  It is currently being trialled on many cancers including Neuroendocrine.  It’s brand name is SPARTLIZUMAB.

How PDR001 works

PDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight cancer cells. Normally, an immune system cell called T-cells recognizes and kills infected or abnormal cells, including those that are cancerous. To prevent T-cells from accidentally damaging healthy and essential tissues, however several immune system checkpoints exist to inhibit, or block, them from going about this work. One example is the programmed cell death 1 (PD-1) pathway. Healthy cells produce and display a protein called programmed cell death ligand-1 or ligand-2 (PD-L1 or PD-L2) on their surface. These proteins bind to and activate a receptor called PD-1 that is produced by T-cells. When activated, PD-1 sends a message to the T-cells that prevents them from attacking that particular cell. Cancer cells can hijack this system by producing PD-L1 or PD-L2, effectively hiding from T-cells and evade destruction.
PDR001 is an antibody, a protein designed to interact with and block a specific target. It acts by binding to PD-1, blocking it from interacting with both PD-L1 and PD-L2. This binding blocks the PD-1-mediated inactivation of the T-cells, so that they are able to recognize and target cancer cells. This should result in a reduction in tumor growth and size.

PDR001 in clinical trials

PDR001 has been investigated in multiple completed and ongoing clinical trials, both alone and in combination with a wide range of other agents.

Novartis presented results from an ongoing first-in-human Phase 1/2 clinical trial (NCT02404441) of PDR001 at the American Society of Clinical Oncology (ASCO) meeting in 2016. Preliminary trial results suggested that the drug is well-tolerated and safe, with a similar profile to other anti-PD-1 drugs currently being developed. The trial is still recruiting patients with various types of advanced cancer at 43 sites across North America, Europe, and Asia; more information is available by clicking on its identification number.

Novartis then initiated several dozen other Phase 1, 2 and 3 trials, all registered on clinicaltrials.gov, to continue investigating the safety and anti-tumor activity of PDR001 in a wide range of cancer types, and in combination with other investigational and approved therapies. For example, a Phase 3 trial (NCT02967692) is comparing the safety and efficacy of PDR001 to a placebo, in combination with Tafinlar (dabrafenib) and Mekinist (trametinib), as a treatment for advanced melanoma.

What about Neuroendocrine?

A phase 2, multi-center study assessed the efficacy and safety of PDR001 in patients with non-functional well and poorly-differentiated Neuroendocrine Neoplasms.  According to the clinical trial document, the types of NENs covered are:

  • Well-differentiated Non-functional NET of Thoracic Origin
  • Well-differentiated Non-functional NET of Gastrointestinal Origin
  • Well-differentiated Non-functional NET of Pancreatic Origin
  • Poorly-differentiated Gastroenteropancreatic Neuroendocrine Carcinoma

The clinical trial indicates the trial is active but not recruiting but it would look like they have all the patients needed and are currently analysing the trial data so far awaiting the next phase perhaps.  In fact I have discovered two pieces of evidence from the trial sponsors:

pdr001 results conclusion
Annals of Oncology (2018) 29 (suppl_8): viii467-viii478. 10.1093/annonc/mdy293

In another analysis of the results:  “Patients with well-differentiated advanced NETs were eligible if they had progressed on prior therapy, including everolimus, while the GEP-NEC patients were eligible if they had progressed on one line of chemotherapy. All patients in the trial received spartalizumab via a 30-minute infusion once every 4 weeks until disease progression or unacceptable toxicity.

In the full well-differentiated cohort, there were 7 partial responses (7%), and 55% had stable disease, while 31% had progressive disease. The confirmed objective response rate was 7%, and the disease control rate was 63%. In the GEP-NEC cohort, the objective response rate was 5%, and the disease control rate was 19%.

The thoracic NETs patients fared best with spartalizumab, with limited responses seen in the pancreatic and GI NETs groups; responses seemed to be associated with PD-L1 expression. In the thoracic NETs cohort, two of five PD-L1–positive patients had a partial response. PD-L1 positivity was more common in the GEP-NEC cohort; among 14 PD-L1–positive patients in that group, the partial response rate was 43%.

The most common adverse events regardless of cause included abdominal and back pain, anemia, dyspnea, and hypertension.

Kjell Öberg, MD, PhD, of Uppsala University in Sweden, discussed the study for ESMO. “We have hope,” he said. “We see that maybe there are some tumor types that might respond to immunotherapy.” In general, NETs are considered an “immunological desert.” There is usually very low infiltration of immune cells in these tumors, and there are a low number of genetic mutation events.”

You can also listen to two very well known NET experts (Simron Singh and Jonathan Strosberg) talk about this trial and the drug ……. “the highest response rate was seen in atypical lung neuroendocrine tumors. It was approximately 20%, but in most cases was not durable”.  See the remainder of the discussion by clicking here.

You can read more about immunotherapy trials for Neuroendocrine Neoplasms by clicking here. This article includes some advice in interpreting the ‘hype’ that can surround immunotherapy which is still a developing approach to treating cancer.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

Please Share this post

Neuroendocrine Cancer: a needle in a haystack


needle in a haystack

It’s no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. It’s also no secret that certain cancers are difficult to diagnose (NETs is one) and there are a number of reasons why this happens, including but not limited to: – they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.

I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established – this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and most detailed staging declaration – this drives treatment plans and surveillance regimes that need to be put into place.

Hunting Tumours – Primary vs Secondary

It’s really important to determine which tumours are primary and which are secondary (metastasis). There’s a number of ways to help work this out and knowledge of NETs epidemiology studies can help.

Specialist Knowledge – certain things are known about the behaviour of NETs

Specialists and in particular NET specialists will be aware of the vagaries of NETs in terms of what tumours are normally a primary and which are normally secondary and many of the pitfalls involved in working that out. Many NETs will have metastasized to the liver at diagnosis, so whilst it is not impossible to have a primary liver NET, the vast majority of liver tumours found will be secondary (metastases). NET Specialists are more likely to have the experience than generalists. They know that the varying metastatic potential depending on the primary site clearly indicates differing biology and genetics across sites and they know that NETs are indeed a heterogeneous group of tumours. The differences cannot be explained by whether the NET is situated in the foregut, midgut, or hindgut. For example, Appendiceal NET is known to be less prone to metastasis. This may be due to the high rate of incidental findings during appendectomies, or because the appendix is an immunological organ where malignant cells can therefore be expected to be frequently recognized by the immune system.

The majority of the digestive tract is drained by the portal venous system, explaining the dominance of liver metastases in this group of tumours. This also explains our finding that many nervous system and bone metastases originate from NETs in the lungs. Disseminated tumour cells may directly reach the systemic circulation from the lungs, whereas if originating from the midgut region, they need to first pass both the liver and the lungs.

As an example of this heuristic knowledge, one Swedish study indicated that two-thirds of peritoneal metastases will be attributed to Small Intestine NETs (SI NETs). SI NETs and Pancreatic NETs (pNETs) are the most likely to metastasize. The least likely sites to metastasize are the Appendix and Rectum. The same study indicated that in addition to the common metastatic locations of lymph nodes and liver, Lung NETs are more likely to metastasize to the brain and bone than other types. I believe the findings from this study more or less correlates to other information I’ve had access to and also confirms the technical behaviour paragraph above.

Multiple Primary Tumours

With NETs there are two scenarios:

1. Multiple primaries in same organ/location (multicentric). This is fairly common in small intestine (SI NETs), stomach/gastric NETs (gNETs), and also found in Lung and pNETs too. NET experts will be aware of the issue and know to look for the possibility. This is an important point with SI NETs as it’s quite long although held together by the mesentery, so a ‘Mark 1 eyeball’ can be more efficient in finding NETs in this organ than scans.  There is a very well known surgical technique called “running the bowel” where they check the small intestine for signs of other primary tumours – they can do the same with the large intestine.  Additional surgeries due to this lack of knowledge could come with significant morbidity. Multiple ‘nodes’ and ‘lesions’ are common in the thyroid.

2. Multiple primaries in different locations. This is common with Multiple Endocrine Neoplasia (MEN) syndromes (the name gives it away) and these may be metasynchronous. MEN1 for example can have tumours in what is called the ‘3 P’ locations, pituitary, pancreas and parathyroid. Of course MEN guys may also have multiple primaries in the same organ (multicentric).  Read more about MEN by clicking here.

There’s probably a third scenario (for all cancers) and that is multiple primaries with different cancers (i.e a second, third and fourth cancer etc). Synchronous would be really unlucky but metasynchonous is more likely and there are many NET patients with a second cancer.

What else helps find a NET? 

There are many other clues open to those involved in diagnosing a NET:

Patient. Very often the patient plays a big part of determining where the primary and other tumours might be by carefully describing symptoms.

Incidental Finds. NETs are very often found incidentally during trips to the ER/A&E and also during tests for something else. This is particularly the case with Appendiceal NETs and might explain why the average age of a patient is significantly lower in this type of NET.

Blood tests and Hormone Markers. We are not yet in a position where these types of tests can diagnose (but we are moving in that direction). In the case of unknown primaries (CUP), sometimes test results can help to find where some of these cancers started. With NETs, symptomatic patients can often test to confirm an elevated hormone marker which may narrow it down to a specific organ or gland. Read more here.

Scans and Endoscopies. Most cancers of a certain size may show up on conventional scanning such as CT, MRI and Ultrasound. Nuclear scans are now playing a bigger part in finding tumours which betray their location through functional behaviour by lighting up or glowing on these imaging devices. Endoscopies (e.g. gastroscopies, colonoscopies, even gastro intestinal pill cameras can be used) can help but like scans are not foolproof). Generally with NETs, if you can see it, you can detect it. Read more here.

Hereditary Conditions. Around 5-10% of NETs are hereditary in nature, mostly involving the MEN group of syndromes. Many of those people will know they are at risk of developing NETs and their doctors should know the most common locations for primary tumours associated with each gene. So a declared or suspected hereditary syndrome is useful in finding primary tumours if they exist and are proving difficult to find.

Biopsies. “Tissue is the issue”. Pathology can very often give really strong clues as to the type of NET and therefore the likely location of a primary tumour, for example additional tests such as immunostains. Many biopsies will come from secondary cancer (metastases), mostly the liver.  Despite all the potential diagnostic routes above, the place the cancer started is sometimes still not found and this may lead to atypical diagnostic/treatment plans and in certain cases this might even include exploratory biopsies via surgery (invasive/minimally invasive), perhaps combined with opportunistic tumour removal if found during the procedure.

Staging. Simple staging can be given if locations of metastases are known. For example in the case of Liver metastases, the stage is automatically Stage 4. However, the full staging definition relies on knowing distant metastases, loco-regional metastases and the full Tumour/Node/Metastases (TNM) definition (size, spread, etc) cannot be fully complete without a primary. Read more here.

Cancers of Unknown Primary

Cancer is always named for the place where it started, called the primary site. Sometimes doctors can’t tell where a cancer may have started. When cancer is found in one or more places where it seems to have spread, but the site where it started is not known, it is called a cancer of unknown primary (CUP) or an occult primary cancer.

When you look at the ratio of all cancers, the figure for cancers of unknown primary (CUP) is quite startling. Depending on where you look the figure is around 2-10%. That doesn’t seem a lot but when you consider the amount of people diagnosed with cancer, the total figure must be staggering. Interestingly, Cancer Research UK say that 60% of CUP cases are in the over 75s. In another interesting Swedish study, doctors claimed that the rates of metastatic cases were higher with certain NETs than they were in their anatomical counterparts, reinforcing the dangerous and sneaky nature of NETs.

Despite quite advanced scanning and diagnostic testing currently in place, and the extensive knowledge of NET specialists, there can still be reasons for not being able to find the primary tumour:

  • The primary is just too small to be seen and is growing quite slow. Very small cancers might not cause symptoms or be seen on scans. This is a particularly relevant point with NETs.
  • The primary could be hidden in tissue in between different organs causing confusion about the actual primary location.
  • The body’s immune system killed the primary cancer. It’s also possible (but not common) that any secondary cancer (i.e. metastases) is still growing.
  • The tumour has become loose from its primary location and exited the body, e.g. from a wall of the bowel and excreted out in the stool.
  • The primary cancer was removed during surgery for another condition and doctors didn’t know cancer had formed. For example, a uterus with cancer may be removed during a hysterectomy to treat a serious infection.

Summary

I hope this is useful for many NET patients, particularly those who are looking for a diagnosis or looking for a primary tumour.

Neuroendocrine Cancer – at times, it can really be like looking for a needle in a haystack.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

Please Share this post

 

RonnyAllan.NET – Community Newsletter Covering November 2018

Newsletter Nov 18
Summary for November 2018

NET News

1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million ‘reach’ on twitter in ONE WEEK straddling NET Cancer Day (see below) – just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter.  So I thought I’d mention it instead.

Mind you, every day is NET Cancer Day on my social media platforms. I push on.

Every day is NET Cancer Day

 

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Join my twitter army for a new paradigm in NETs awareness

2.  Thanks for supporting my photo on Facebook and Twitter – it has become the most liked post on my Facebook ever with over 1000 likes.  You can link directly to it by clicking here:

45610294_1983128528439302_5378612202188046336_n

3. Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.  I recently has a Renal MAG3 nuclear scan to determine the efficacy of my kidney function – waiting on results but expecting good news.

fibrosis an unsolved mystery

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in November

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer is normally slow growing Neuroendocrine Cancer Syndromes: it may be slow growing BUT …..  My new campaign to highlight issues surrounding living with Neuroendocrine Cancer
pancreatic vs neuroendocrine Awareness article to illustrate the differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary.
fibrosis an unsolved mystery Updated version of NET Fibrosis.
slow growing cancer Updated version of NET – normally slow but always sneaky
witches brew Updated version of NET Syndromes – a witch’s brew
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
Newsletter Oct 18
October 2018 Newsletter in case you missed it.
caricture For most of November, my name branded facebook page was the fastest rising public Facebook page on the planet about NETs. I use this page to like and comment on other healthcare pages (it draws in interest in NETs). Some of you will also recognise it as the main ID inside my closed group. It’s also a backup to this page (NETCancerBlog) as you will not always see stuff on my main page due to Facebook gremlins.

(Don’t unlike, I need your strength in numbers to generate awareness).

There were many distractions in November 2018, I’m actually quite busy with external projects but still managed over 35,000 views, the second biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Home page / Archives More stats 2,936
Neuroendocrine Cancer – normally slow but always sneaky? More stats 2,321
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,473
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. More stats 1,390
Living with Neuroendocrine Cancer – Home Page More stats 1,345
Neuroendocrine Cancer – Hormones More stats 1,333
Neuroendocrine Cancer – is normally slow growing BUT ….. More stats 1,305
Neuroendocrine Cancer – tumour markers and hormone levels More stats 1,026
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 959
Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas More stats 944
The Human Anatomy of Neuroendocrine Cancer More stats 875

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 30th November, there were almost 2200 people in the group. It’s the fastest growing group in the world for NETs.

And I’m working on a guest Gastroenterologist for a third chat.  To be confirmed.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’m working on a video shoot next week for a Pharma company who are looking at how cancer patients live from day to day.  More info later when I am at liberty to tell you.
  • I’m working on an association with a Pharma company to help with patient portals.  Early days.
  • I’m working on an association with a healthcare company to help with their marketing.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 244 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 203 times by other tweeters, 2331 people looked at my profile (where it mentions NETs) and I gained 64 new followers. My weekly ‘reach’ is consistently between 400,000 and 800,000, heading for 1 million soon. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • proud to be

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 777,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7200 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas

pancreatic vs neuroendocrine

I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press.  The two main reasons I take up these campaigns are as follows:

1.  They are totally different cancers despite an anatomical relationship.  Although they share some similar presentation, they have different signs, different treatments and vastly different prognostic outcomes.  What that means is that anyone who is looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be (particularly with the prognostics).  See more below. 

2.  These two different cancer types have different awareness organisations, patient support groups and patient leaders/advocates. In most cases, vastly different awareness messages. Both of these organisations and advocates need all the help they can get, they need all the resources and funding they can get. 

Both Pancreatic Cancer and Neuroendocrine Cancer are diseases that need maximum publicity, both types of cancer have their own unique situations, thus why the awareness messages can be so vastly different.  It’s really important, therefore, that publicity surrounding famous patients be attributed to the correct cancer type in order that the advocate organisations and supporters can gain maximum benefit to forward their causes.  Unfortunately, thanks to doctors and media, this very often doesn’t work out in favour of Neuroendocrine Cancer due to the Human Anatomy of Neuroendocrine Cancer (this problem actually goes beyond the pancreas).

Where the press and doctors regularly get it wrong

Two famous people in particular, one in 2011 and the other this year, are regularly reported in the press as having died of Pancreatic Cancer.

Steve Jobs.  One of the most famous technical innovators of his time and creator of the most valuable company in the world. He had a Neuroendocrine Cancer with a pancreatic primary.  Read his story here.

steve-jobs-55-to-2011

Aretha Franklin. One of the most famous soul singers of her time.  She had a Neuroendocrine Cancer with a pancreatic primary. Read her story here.

rip-Aretha-Franklin-1

To summarise, Neuroendocrine Cancer is not a “type” of another cancer.

What are the differences? 

For me, one of the two main differences are the cell type. When people talk about Pancreatic Cancer, they really mean something known as “Pancreatic Adenocarcinoma”.  It starts in the exocrine cells, which produce enzymes to support digestion.  Neuroendocrine Tumors start in the endocrine cells which produce hormones.

For me, the other big difference is prognostics.  Unfortunately, it is statistically proven that most people with Pancreatic Adenocarcinoma will die, whereas most people with Neuroendocrine Tumors with a pancreatic primary will live.

For a more detailed comparison, see this excellent article from NET Research Foundation.

iStock-536892277-768x891
diagram courtesy of NET Research Foundation

Pancreatic Cancer – Why I support their campaigns

Personally speaking, as a healthcare advocate online, I do support many cancer awareness campaigns, I think this is important to get similar help coming the other way (this frequently works for me).  However, I very much suspect, other than Neuroendocrine Cancer, my biggest support area online is for Pancreatic Cancer and other “less survivable” cancers.  I’m drawn by their excellent campaigns where they focus on key messages of prognostics for what is essentially a silent disease (in many ways the same issue with Neuroendocrine Cancer) and they make these more compelling by focusing on people rather than gimmicks. The prognostics can be upsetting reading as they are quite shocking figures which have not changed much in the past 40 years, a key sign that more must be done for this awful disease.   I frequently share this symptom graphic below because it might save a life and I ask that you do too.

pan can symptoms

Often though, the patients with a Neuroendocrine Cancer (pancreatic primary) are drawn to getting support from Pancreatic Cancer organisations. I suspect this is a combination of their own perceptions, their doctor’s language in describing their cancer type, and even something as simple as it was the first place they found help and support and they stick with that organisation.   You may also be interested in my article “I wish I had another cancer” – click here.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner


patients included

 PLEASE SHARE THIS POST

 

RonnyAllan.NET – Community Newsletter Covering October 2018


Summary for October 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don’t seem very ‘patient’ friendly.

2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses.  A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new audiences rather than just share stuff between NET patients and advocates.

the best kind of story – a 2 legged one

3. I’m still reeling from winning the 2018 WEGO Blog Award and if you missed the live announcement, you can listen to the quite short video clip here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer Syndromes: A Witch’s Brew.  My 2018 themed Halloween post with a serious awareness message.
How to talk to a cancer patient without being a complete twit – a serious but partly light hearted slant on communications with a cancer patient, includes doctor-patient communications.  Bonus article about signs you need a new doctor.
Living with Cancer – Worrier or Warrior ? worry and anxiety is common with cancer patients but can you worry too much to the point it is counter productive?  Even warriors can worry.
Short Update from NANETS 2018
On your Bike – personal story about trying to live better with cancer and its consequences
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
September 2018 Newsletter in case you missed it.

There were many distractions in October 2018, I was very busy with Ipsen speaker stuff plus a holiday in Scotland but still managed over 32,000 views, the third biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer – Trick or Treat? More stats 1,535
Living with Neuroendocrine Cancer – Home Page More stats 1,116
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,065
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 866
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 864
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 817
‘Chinese Dumplings’ and Neuroendocrine Cancer More stats 809
Neuroendocrine Cancer – Short Update from NANETS 2018 More stats 758
Ever wonder what caused your NET? More stats 722
Gallium 68 PET Scans – Into the Unknown More stats 708

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st October 2018, there were almost 2000 people in the group. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I spoke at the Eye for Pharma event in London alongside an important Pharma NET contact. See above.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 190 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 134 times by other tweeters, 1524 people looked at my profile (where it mentions NETs) and I gained 50 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 741,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7000 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Neuroendocrine Cancer: A Witch’s Brew of Signs and Symptoms


cancer growth

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it’s a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.

The cancer can often be uncannily quiet, but the tumours can be ‘functional’ and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.  For those looking for a diagnosis, it can be very frightening.

One or more of the NET syndromes can be a weird concoction of strange, powerful or terrifying ingredients, designed to make you very ill; and doctors will be confused. 

Certain types of Neuroendocrine Cancer were once referred to by the out of date term of ‘Carcinoid‘ – now correctly referred to as a NET prefixed by its anatomical primary location. For the time being, the term Carcinoid Syndrome, associated with these types of NET persists; and is known to be capable of over secreting (amongst others) the vasoactive substance called serotonin. It is commonly thought that serotonin is the cause of the flushing, but this is only partially correct, the flushing also results from secretion of kallikrein, the enzyme that catalyzes a conversion to bradykinin, one of the most powerful vasodilators known.  Other components of the carcinoid syndrome are diarrhea, probably caused by the increased serotonin, which greatly increases peristalsis, leaving less time for fluid absorption, a pellagra-like syndrome, probably caused by diversion of large amounts of tryptophan from synthesis of the vitamin B3 (Niacin), which is needed for NAD production (oxidized form of B3). It also causes fibrotic lesions of the endocardium, particularly on the right side of the heart resulting in insufficiency of the tricuspid valve and, less frequently, the pulmonary valve and, uncommonly, bronchoconstriction. Other fibrosis spells include mesenteric and retroperitoneal desmoplasia which have the potential to dangerously obstruct important vessels and cause general discomfort at best.

 

serotonin

 

Carcinoid Syndrome is one of the most powerful and dangerous ‘witch’s brews’. 

The classic carcinoid syndrome includes flushing (80%), diarrhea (70%), abdominal pain (40%), valvular heart disease (40% to 45% but reduced to 20% since the introduction of somatostatin analogues), telangiectasia (25%), wheezing (15%), and pellagra-like skin lesions (5%). Carcinoid syndrome, first described in 1954 by Thorson and co-workers, has the following features: malignant neuroendocrine tumour of the small intestine, normally with metastases to the liver, sometimes with valvular disease of the right side of the heart (pulmonary stenosis and tricuspid insufficiency without septal defects), peripheral vasomotor symptoms, bronchial constriction, and an unusual type of cyanosis. One year later, Dr. William Bean gave the following colorful description of carcinoid syndrome:

“This witch’s brew of unlikely signs and symptoms, intriguing to the most fastidious connoisseur of clinical esoterica—the skin underwent rapid and extreme changes resembling in clinical miniature the fecal phantasmagoria of the aurora borealis.” 

Other witch’s brews include the group of NET syndromes associated with over-secretions of Insulin, Glucagon, Gastrin, Vasoactive Intestinal Peptide (VIP), Pancreatic Polypeptide (PP) and Somatostatin.  Read more about these and other syndromes here.

NET Syndromes

One of the most scary witch’s brews is the group of symptoms associated with one of the most uncommon types of NET, the catecholamine and metanephrine (adrenaline and noradrenaline) secreting tumours known as Pheochromocytoma and Paraganglioma. These tumours are likely to cause a barrage of symptoms such as High blood pressure, Heavy sweating, Headache, Rapid heartbeat (tachycardia), Tremors, Paleness in the face (pallor) and Shortness of breath (dyspnea).

spotlight on pheo para

All of the above is a diagnostic nightmare for those who have the symptoms and remain undiagnosed – no fun for the doctors either – this why we need so much more awareness and education – it’s one of the key aims of all my social media sites.  Another aim of my sites is to support those who are diagnosed as these symptoms can continue following diagnosis and treatment. Many NET patients need constant surveillance and follow-up, many for life.

This is a very spooky disease, it will slowly grow without you knowing, it will mess with your body and mind, and if left alone to plot its devious and destructive course, it will kill.  Some are faster growing but they have the same traits – they just kill faster.  Share this post and potentially save a life.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

 

RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletter Sep 18

Summary for September 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium kicks off in a few days. I’m hoping to bring you news from the event (remotely, I won’t be there) and perhaps a summary in next month’s newsletter.

2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. Be careful where you look as many are still behind the curve on this issue. Their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course. Watch this space.

3. This very old news from 2007 has resurfaced – an autopsy on former US President Eisenhower confirmed he had a Pheochromocytoma after suffering from heart issues for some time prior to his death. Nonetheless, good publicity for Neuroendocrine Cancer. Read my Pheochromocytoma article here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. I think they are still consulting with London on the feasibility of trying PRRT first. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist – this article will help and it also includes 10 questions to ask.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

don't worry it's benign widescreen Don’t worry, it’s benign! An article about the dangers in assuming that all NETs are benign. All NETs have malignant potential.
Diabetes The NET Effect Diabetes – the NET Effect. Latest article in the “NET Effect” series.
Diagnosing the undiagnosed Diagnosing the Undiagnosed. An article designed to give those looking for a diagnosis, some questions to ask with references. Plus other advice
A Neuroendocrine Tumour is NOT Neuroendocrine Cancer is not a type of another Cancer….. PERIOD! A follow on from the Aretha Franklin article to emphasise that Neuroendocrine Cancer is a cancer in its own right.
Newsletter Aug 18 RonnyAllan.NET – Community Newsletter August – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits. I now have two articles with over 20,000 views.
lets raise our sites Let’s raise our “sites” – twist on the word sights to indicate we need to keep on letting people know that a NET in a particular part of the anatomy should not be called that anatomical cancer. The change in graphic seems to have made this more popular.

There have been many distractions in September 2018, I was very busy with WEGO Health stuff but still managed 25,000 views. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 1,279
Living with Neuroendocrine Cancer – Home Page More stats 1,212
Diagnosing the Undiagnosed More stats 942
Neuroendocrine Cancer – tumour markers and hormone levels More stats 913
Neuroendocrine Cancer – normally slow but always sneaky More stats 785
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist) More stats 760
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption More stats 635
Neuroendocrine Cancer – let’s raise our ‘sites’ More stats 618
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 610
Diabetes – The NET Effect More stats 593

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 1st October 2018, there were almost 1900 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support and it meets with my association criteria.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 220 times on my personal account which led to over 140,000 views of my tweets. I was mentioned 145 times by other tweeters, 1648 people looked at my profile and I gained 74 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 600 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 709,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 6800 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Diagnosing the Undiagnosed


Neuroendocrine Cancer is one of a number of “difficult to diagnose” conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In some cases, many people don’t feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It’s a very sneaky type of cancer and if left too long it can be life threatening – CLICK HERE to find out why.

The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate. It’s not only a sneaky type of cancer but it’s also very complex. It’s a heterogeneous group of malignancies with a varied and confusing histology and nomenclature to match. As I said above, many people are asymptomatic for years whilst the tumor grows and some might say that it’s somewhat ‘lucky’ to have symptoms to help aid a diagnosis. Many find that a lack of knowledge of Neuroendocrine Cancer in primary care, doesn’t always produce results. Common misdiagnoses include (but not limited to), Irritable Bowel Syndrome (IBS) and other common digestive diseases, menopause, appendicitis, hypertension, gastritis, asthma. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care if a referral for ‘something’ can be achieved.

……..cue internet searches (Dr Google)

I think the rise and the power of the internet and rise of social media applications is very much helping generate awareness and knowledge of Neuroendocrine Cancer and those looking for a diagnosis may find help in this way. I suspect this instant access to information has played its part in the diagnostic improvements I mentioned above. Take my own efforts for example, I’m a wee Scottish guy with a computer and I’m already accelerating towards a million blog views – there’s clearly a market for what I produce. In terms of those looking for a diagnosis, if only one gets an earlier diagnosis due to my site, I’ll be happy.

Unfortunately, the internet can often be a minefield and in many cases, can lead to quite unnecessary worry for those looking for a solution.

Incoming Questions

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

Many have already had multiple doctor’s appointments and tests. If they have not yet had a scan, I encourage them to try to get one ‘by hook or by crook’. Despite what you read on patient forums and surveys, the vast majority of Neuroendocrine diagnoses will be triggered by a conventional imaging such as CT and/or MRI. If you can see it, you can detect it. 

When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again confirming the power of the internet and the savvy ‘internet patient’. This is fine if you look in the right places of course – for certain things there are more wrong places on the internet than right ones.

If I have time, I’m happy to chat with these people, some are very frustrated – in fact some are so frustrated that they just want a diagnosis of something even if that something is really bad.  Some are not showing anything on any scan but in certain cases, it can be likened to finding a needle in a haystack.

What do you say to someone who is utterly convinced they have Neuroendocrine Cancer but CT/MRI/Octreoscan/Ga68 PET are all clear, Chromogranin A and 5HIAA are in range but they still say they have (say) diarrhea with its potential for literally thousands of differential diagnoses. It’s a tough gig.

Example:

My scan came back normal. That should be good news. But, if there is no tumor, how can I be suffering from all the symptoms of carcinoid syndrome? Is that diagnosis wrong? Are the urine and blood test results wrong? I’m awaiting a MRI scan to take another look to see if the doctor can find anything. I don’t know what they’ll find. I don’t want them to find anything. But I’m afraid of what will happen if they don’t.

Anon

Patient Forums

I always let the undiagnosed know that Neuroendocrine Cancer patients are some of the most friendliest and helpful people you can meet, they will treat you as one of their own. There will be a number of diagnosed people online who have gone through what the undiagnosed are going through, so they will both sympathise and emphasise. But … this can often have the adverse effect of pushing them into believing they must have Neuroendocrine Cancer. This makes for interesting discussions given the number of people who automatically assume that ‘flushing’ or ‘diarrhea’ (as described by the undiagnosed) must be Neuroendocrine Cancer without any reference to the many differential diagnoses and the context of what that actually means in Neuroendocrine Cancer terms.

10 Questions to ask your doctor/specialist for those Diagnosed with Neuroendocrine Cancer (and where to find a specialist)

I once wrote an article for DIAGNOSED NET Patients suggesting 10 Questions to ask their doctor. So I wanted to take a step back in context, using the knowledge I now have, and put myself in the shoes of someone who thinks they may have Neuroendocrine Cancer but is not yet diagnosed.

Key questions to ask your doctor/specialist for those trying to confirm or discount Neuroendocrine Cancer

Dear undiagnosed people. I totally understand your fear. There’s nothing worse than being ill and not knowing what illness you have. I’ve therefore compiled a list of 3 key questions for you to ask – think of it as a tick list of things to ask your doctor to do or check . I have linked several background articles for you to prepare your case. However, I cannot promise your doctor will agree or take any action, in fact some might be annoyed about the lack of trust. However, doing your homework really helps, including diaries and other evidence.

I also wouldn’t say that a negative to all the questions will mean you definitely do not have Neuroendocrine Cancer but at least these questions might provide your doctor and yourself with some food for thought, perhaps leading to the diagnosis of ‘something’. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose.

Questions for the UNDIAGNOSED to ask their treating physician

“I think I might have a type of cancer known as Neuroendocrine Cancer or Neuroendocrine Tumours (NET) because <<< insert your own story>>>. Would you please consider the following tests and checks:”

1. Chromogranin A (CgA) is a marker which is quite sensitive for Neuroendocrine Tumours, essentially measuring tumour bulk potentially indicating the presence of Neuroendocrine Tumours. There can be other reasons for an elevated CgA figure, including the patient’s use of proton pump inhibitors (PPI) (see the article for an alterative test where this is the case). Read more here – Neuroendocrine Cancer – Tumour and Hormone Marker tests.

2. 5HIAA is a hormone marker for the most common type of NET, particularly if the patient is presenting with flushing and diarrhea. Many NETs have associated syndromes and hormone markers can be a guide to help with diagnostics. Read more about 5HIAA and other hormone markers for different types of NET and different syndromes here Neuroendocrine Cancer – Tumour and Hormone Marker tests.

3. Scans. Most NETs can be seen on a CT scan although liver metastasis can often show more clearly on an MRI. There are also nuclear scan options to confirm conventional imaging findings. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation. In some cases, nuclear scans will find things that conventional imaging cannot because radionuclides can normally pick up oversecreting tumours. Read more in my article “If you can see it, you can detect it”.

You can hear two NET specialists talking about the issues surrounding the diagnostics here.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

wego-blog-2018-winner

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


Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.

About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet which published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?

I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is a cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting pictures of black and white striped animals.

I’m even starting to think that the well known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.

Neuroendocrine Cancer is NOT a type of another cancer PERIOD!

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

 

 

RonnyAllan.NET – Community Newsletter Covering August 2018

RIP Aretha Franklin – Neuroendocrine Cancer

Summary for August 2018

NET News

Several headlines covering the past month:

1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as ‘Pancreatic Cancer’ mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death certificate – I believe this is the most concrete evidence of her type of cancer. Click here for Aretha.

2. PRRT in UK took a step forward when NICE finally approved the drug (Lu-177) for use in England and there is mention of some direction for Wales in the document (I’m trying to find out what it means for Wales). Scotland had already been approved last month and I assume Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place. You can read the NICE approval document which also has a very interesting ‘Implementation’ section. Click here to read.

3, The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. However, their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course.

Personal News

My NET. I await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. The holiday season will soon be over, fortunately the issues are not classed as urgent at this stage. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

WEGO Health Awards. I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.

Blog Site Activity in August

Due to the vagaries of Facebook inner workings, some of these articles created or updated in August 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

I wish I had another cancer – not about me but about ‘cancer Olympics’ we see online – there’s a twist to this one though.
RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer. Very said news but we are currently battling to ensure awareness comes to Neuroendocrine Cancer.
J Nucl Med 2017 Mar 58(3) 451-7, FIGURE 2 (1) 64Cu-DOTATATE – a potential addition to the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer? news from the Nuclear PET scan industry of interest to NETs plus why there is a shortage of Ga68 PET radionuclide in USA.
prrt update PRRT Update – patients please read and advise on new locations. Contains the patient provided update on new locations for insurance funded PRRT in USA. PLUS news of PRRT approval in the United Kingdom
Newsletter July 18 RonnyAllan.NET – Community Newsletter July 2018 – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits
Upgraded from 7 to 8 tips for conquering fear
My most viewed article and updated now to include Aretha Franklin – The Human Anatomy of Neuroendocrine Cancer

There have been many distractions in August 2018 but following the Aretha headline, I broke all records for hightest numbers of viewing in one day, in one week and in one month. I almost made 40,000 views. Here are the top 10 most read articles which contributed to August’s figures:

RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer More stats 7,608
The Human Anatomy of Neuroendocrine Cancer More stats 3,985
Home page / Archives More stats 1,831
Living with Neuroendocrine Cancer – Home Page More stats 1,232
I wish I had another cancer More stats 1,185
Chemotherapy for Neuroendocrine Cancer More stats 807
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 778
Ever wondered what caused your NET? More stats 765
Neuroendocrine Cancer – normally slow but always sneaky More stats 756
Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! More stats 639

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st August 2018, there were almost 1650 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event, This was not a NET Cancer event but I was invited due to my wider healthcare advocate work. That was a tough gig but great experience. There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 211 times on my personal account which led to over 138,000 views of my tweets. I was mentioned 109 times by other tweeters, 2012 people looked at my profile and I gained 30 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. WEGO Health Awards 2018I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.

Social Media and Stats

Blog Milestone. At the end of August, I accelerated past 683,000 blog views! Thank you all so much Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Surpassed 6641 followers by the end of August but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in AUGUST. Onwards and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

RonnyAllan.NET – Community Newsletter JULY 2018

Newsletter July 18

Summary for July

Personal News 

Another unusual month, after a bizarre June.  The chest infection has gone but still awaiting results of an x-ray to confirm.  July was supposed to be partly holiday but that was cancelled due to illness.  The chest infection caused a 4kg weight loss and only half of this has returned to date.  I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public and privately, I’m most grateful.  I received my 100th Lanreotide earlier in the month and I’m still here following my 8 year ‘cancerversary’ on 26 July 2018.  Many of you are still here too – thanks for the wonderful comments to this Facebook post – click here.

NET News

PRRT in UK took a step forward when both the Scottish Medicines Consortium and NICE approved the drug (Lu-177) for use in Scotland and England respectively.  Wales and Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place.  That said, currently there are no PRRT facilities in Scotland (that I know of) and very few in England.  Watch this space.

Blog Site Activity in July

Due to the vagaries of Facebook inner workings, some of these articles created or updated in July 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 PET-CT-ScannerNeuroendocrine Cancer: Ga68 PET Scan – a game changer?

G68 PET Scans – a game changer? 

My latest article following the results of my first Ga68 PET scan. I’m no longer a ‘boring’ stable patient.

  Neuroendocrine Cancer – Mesenteric and Retroperitoneal Fibrosis – an unsolved mystery?

a long-awaited article about something which has plagued me since diagnosis but has now had an impact on my potential treatment strategy.

  “What are you doing this afternoon”

Words which triggered my diagnosis.  I got a scan.

PRRT Update – patients please read and advise on new locations.  Contains the patient provided update on new locations for insurance funded PRRT in USA.

Lanreotide – 100 shots!

My 100th Lanreotide birthday!

Will you vote for Ronny Allan?

I need your votes to progress into the finals of the WEGO Health Awards.  Please see how you can help inside this article.

Neuroendocrine Cancer – tumour markers and hormone levels – did I miss any?
   177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective

news of a new PRRT trial

RonnyAllan.NET – Community Newsletter June 2018 – in case you missed it.

There have been many distractions in July 2018 but a respectable ~28,000 views.  Here are the top 10 most read articles which contributed to July’s figures:

Neuroendocrine Cancer – normally slow but always sneaky More stats 2,730
Home page / Archives More stats 1,977
Neuroendocrine Cancer: Ga68 PET Scan – a game changer? More stats 1,506
Living with Neuroendocrine Cancer – Home Page More stats 1,047
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist) More stats 943
“What are you doing this afternoon” More stats 678
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 627
RonnyAllan.NET – Community Newsletter JUNE 2018 More stats 620
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 619
177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective More stats 606

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Group


As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here(please answer the simple questions so you can be processed quicker). As at 30 July 2018, there were almost 1400 people in the group. I might cap at 2000 to maintain the integrity of the site. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event,  This was not a NET Cancer event but I was invited due to my wider healthcare advocate work.  That was a tough gig but great experience.  There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 179 times on my personal account which led to over 123,000 views.  I was mentioned 101 times by other tweeters, 1909 people looked at my profile and I gained 39 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 voting is now open.  If you would like to vote for one of my five nominations, please see here for details – click here.

Social Media and Stats

Blog Milestone.  At the end of July, I accelerated past 640,000 blog views! Thank you all so much Keep sharing!  On track for one million in the latter half of 2019.

Facebook Milestone.  Surpassed 6430 followers by the end of July but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  I really enjoy these pictures, I hope you do too. You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in JULY.  Onwards and upwards!

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?


Background

It has long been observed that certain Neuroendocrine Tumours (NETs) are often associated with their ability to secrete hormones and these substances are thought to be responsible for the collection of symptoms which include (but not limited to) diarrhea, flushing and wheezing.  One of the lesser known aspects of this disease is the development of fibrosis, both local and distant. These fibrotic complications may lead to considerable morbidity. They can also result in incidental diagnoses of NETs after causing abdominal obstructions.

The most well known form of fibrosis is ‘Hedinger Syndrome’ (so-called Carcinoid Heart Disease) tightly associated with midgut NETs and will not be covered further. However, mesenteric fibrosis is actually more common and also associated with midgut NETs.  There are other less common locations involved including retroperitoneal fibrosis, pleural and pulmonary fibrosis and skin fibrosis.

According to a paper (abstract linked below) by Professor Martyn Caplin (et al) regarding mesenteric fibrosis, “it often has a characteristic appearance of a mesenteric mass with linear soft tissue opacities radiating outward in a “wheel spoke” pattern associated with distortion of the surrounding tissues” (see graphic below).

The mesentery and retroperitoneum areas

The mesentery and retroperitoneum are complex to describe but think of the mesentery as something holding the small intestine together with all its folds and the retroperitoneum describes the part of the abdomen that is generally closer to your backbone than to your belly button, i.e. behind the intestines.

Often labelled ‘Desmoplasia’, it is easily spotted on CT and MRI scans and is one of the unusual features of NETs vs other types of cancer.  Some examples are below:

Desmoplastic-reaction-The-characteristic-desmoplastic-reaction-comprises-a-mesenteric
Desmoplastic reaction. The characteristic desmoplastic reaction comprises a mesenteric mass (black asterisks) with linear soft tissue opacities radiating outwards in a ‘spoke-wheel’ or stellate pattern (black arrows) and associated indrawing of the surrounding tissues . Distortion and retraction of the adjacent soft tissues results in kinking of the small bowel and can cause partial or complete bowel obstruction. The mesenteric mass is often associated with coarse calcification (black arrowhead).  
Metastatic-carcinoid-tumor-to-the-root-of-the-mesentery-arrow-causing-typical
Metastatic Neuroendocrine Tumor to the root of the mesentery (arrow) causing typical circumferential desmoplastic