Thanks a MILLION …and another half!

Thanks a MILLION …and another half!

Awareness, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email thanks all! I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and now in December 2020, a Christmas present of one and a half million!  When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach 1.5 million hits and accumulating around 17,000 followers across all my social media sites.I'm now heading for 2 million and I often think I might have a screw loose by even thinking about…
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Early diagnosis of late stage cancer!

Early diagnosis of late stage cancer!

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon once said something similar.  Clearly doctors are 'guesstimating' so these…
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Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION There is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety and 'rage'. However, it's a really complex issue for lay people and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based around years of unsubstantiated and unmoderated debate inside patient forums without professional input.  This is not an attempt to bash patient leaders and forum administrators, because full understanding of these issues needs a much wider moderation. I've spent a considerable time researching and analysing…
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The NETest® – a Chromogranin A replacement and more?

The NETest® – a Chromogranin A replacement and more?

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Tumour Markers GeneralFor some years the gold standard tumour marker for Neuroendocrine Neoplasms (NENs) has been and remains today, Chromogranin A (and for certain scenarios Chromogranin B and C can provide some additional clues).  Pancreastatin, which is actually a molecule of Chromogranin A, is another marker touted but appears to be limited to USA. Its main advantage is the ability to better handle the effects of Proton Pump Inhibitor (PPI) use which is prevalent in the general population.  As we move to a new era of molecular/genetic tumour markers, there's a danger that NENs will be left behind, stuck with diagnostic tools not capable of meeting new demands. I see a…
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“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy
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 and my large internet footprint leads them to me. 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, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…
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Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials
What is PEN-221? Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors.  These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221. Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized upon binding to the receptor and linking a toxic payload to an SSTR2 agonist is a potential method to kill SSTR2-expressing tumor cells. PEN-221 is a conjugate consisting…
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Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials
What is ONC201? A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically uncommon as targets in oncology, GPCRs control an array of critical prosurvival and stress signaling pathways that are often dysregulated in human cancer to favor cancer cell survival and propagation. The ability of imipridones to target GPCRs with a high degree of selectivity represents a novel opportunity in oncology that generates remarkably safe and effective therapeutics. ONC201, the founding member of this novel class of therapies, is an orally active, safe, and selective antagonist of…
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Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Update: December 30, 2020 - The China National Medical Products Administration has approved surufatinib for the treatment of patients with non-pancreatic neuroendocrine tumors. Read more here.  In China, the drug is known as Sulanda.An extremely interesting drug in the pipeline which has been featured at ENETS, NANETS, ESMO and ASCO.  – Company plans to complete rolling submission in the first half of 2021 –– The pivotal Phase III SANET-ep trial demonstrated surufatinib reduced risk of progression or death by 67%, extending PFS of non-pancreatic NET patients with an acceptable risk/benefit ratio –– The pivotal Phase III SANET-p trial demonstrated surufatinib reduced risk of progression or death by 51%, extending PFS of pancreatic NET patients with…
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Neuroendocrine Cancer: No one gets it until they get it

Neuroendocrine Cancer: No one gets it until they get it

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike…
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Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Treatment
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…
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Neuroendocrine Cancer: a needle in a haystack?

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose 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…
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Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine Type". Her death certificate quoted "Pancreatic Neuroendocrine Cancer". Despite this, the media outlet 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…
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Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

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

Clinical Trials, Living with Neuroendocrine Cancer, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Edit 4th September 2020.   64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020.  Expanded Access Program via clinical trial now recruiting - see below.  The objective of this trial is to provide patients with confirmed or suspicion of NET access to Copper Cu 64 Dotatate for the detection, localization, and monitoring of SSTR expressing NETs.Edit 22 Aug 2019.  US FDA announced approval of Ga68 DOTATOC.  There's an overlap to this story.  Read more here.Edit 10 Jan 2019: RadioMedix and Curium Announce…
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Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  BackgroundIt 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…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email https://youtu.be/n17KUCiFaqU?t=7 On 8th July 2010, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy.  I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, I wasn't actually ill! Rewind two months, I had an incidental set of blood…
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Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Clinical Trials, Treatment
Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth.  In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast, liver, and certain types of lung cancers, among others. The Clinical Trial The primary goal of the phase II study is to evaluate how well pNET tumors respond to Sapanisertib.…
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Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diet and Nutrition, Treatment
Diarrhea is a huge subject for NET patients, whether it's caused by the tumor itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life.  Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate.  I don't normally write articles on over the counter commercial products but this one is an exception given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).…
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RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places.  Help me populate locations in my live article on  PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence. MIDATECH Pharma…
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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis at the end of 2017.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I've always known I've had some digestive issues related to malabsorption. However, I'm not losing weight - this has been stable for some years (but see below).  Plus my key vitamin levels (B12 and D) are in range.  However, I had been struggling with a lot of bloating issues, thus the trial.  You know me, I like to research and analyse such things! I've actually written about a lot of these issues in my Nutrition series ..... so this is now 'Article Number…
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PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)

PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_12014" align="aligncenter" width="1024"] Radioimmunotherapy[/caption]What is Targeted Alpha-emitter Therapy?  Regular PRRT which is authorised for use now, i.e. Lutathera/Lu177 is a beta therapy.  Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles to transport the radioisotopes to the…
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NETwork with Ronny © – Community Newsletter DECEMBER 2017

NETwork with Ronny © – Community Newsletter DECEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys.  I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible to carry that momentum on in 2018 but I'll give it a go!  Check out my top 6 posts of 2017 by clicking here. AND ..... I'm now officially ronnyallan.NET…
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Update:  Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Treatment
This is an excellent and positive video based overview of where we are with the Management of NETs.  This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference.  This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too!  I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way - not seen it done this way before.   Slightly out of date as…
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NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥ That said, I was actually pretty…
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NETwork with Ronny © – Community Newsletter OCTOBER 2017

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017.  A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site.  I suspect the number of shares will never be beaten (652 in 36 hours).  31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017.  It also made October 2017 the highest monthly views ever.  I am so grateful to those who made that happen ♥ What's in the NET News The following news items may be of interest:   The huge (but expected) news…
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Neuroendocrine Neoplasms – Can they be cured?

Neuroendocrine Neoplasms – Can they be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community held groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (which are now quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for many cancers, including…
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Weight – the NET Effect

Weight – the NET Effect

Diet and Nutrition, Survivorship
Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I'd like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues. I once wrote a patient story for an organisation and the headline was "Did you mean to lose weight".  Those were actually the words a nurse said to me after I nonchalantly told her I thought I'd lost some weight (....about half a stone).  I answered the question with "no" and this response triggered a sequence…
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Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] [caption id="attachment_4318" align="aligncenter" width="500"] It's about others too[/caption] Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
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Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION.  When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility.  We all react differently but in general terms…
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The Dissection of Neuroendocrine Cancer

The Dissection of Neuroendocrine Cancer

Awareness
Almost every day I see something in my news feed about Neuroendocrine Cancer .... an article, a tweet, a blog post, a subscription, an alert of some kind.  Certain ones catch my eye and then something in the detail leads me to disappointment at the realisation I'd not be able to share the information because of a major flaw (amongst other alleged awareness topics).  A common flaw is the failure to recognise that Neuroendocrine Neoplasms (Carcinomas and Tumors) can be found in numerous SITES in the human anatomy.  The latest article I read about Steve Jobs was a good read until I noticed it was actually about Pancreatic Cancer and inferred that a pancreatic NET was a subtype of Pancreatic Cancer.  I spend a lot of time supporting Pancreatic Cancer because…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
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The Invisible NET Patient Population 

The Invisible NET Patient Population 

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. In fact, other national declarations of incidence and prevalence of NENs seem to bear these statistics out, i.e incidence rates of 7-8/100,000 ...... almost 7 times the rate recorded in the 1970s. If you want to understand the…
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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
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NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here. Personalised PRRT is highlighted.  Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS.  I've not watched them all yet due to holiday but they are always great!  Click here. PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
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NETwork with Ronny © – Community Newsletter MAY 2017

NETwork with Ronny © – Community Newsletter MAY 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…
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ASCO 2017 – Let’s talk about NETs #ASCO17

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials
ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field.  As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display.  This is fairly complex stuff but much of it will be familiar to many.  I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more.  For many the extract title and conclusion will be sufficiently educational or at least…
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All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Short PRRT PrimerWhat is Peptide Receptor Radionuclide Therapy (PRRT)?For those who are still not sure what it's all about. This is a non-surgical treatment which is normally administered intravenously. It's based on the use of somatostatin receptors to attract a 'radiopeptide'. The radiopeptide is a combination of a somatostatin analogue and a radioactive material. As we already know, somatostatin analogues (i.e. Lanreotide/Octreotide) are a NET cell targeting drug using somatostatin receptors, so when combined with radioactivity, it binds with the NET cells and delivers a high dose of targeted radiation to the cancer while preserving healthy tissue in an attempt to reduce or kill tumours. In general, patients tend to…
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NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in…
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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION.There's a lot of inaccurate and out of date information out there. Some is just a lack of understanding, some caused by out of date websites, often as a result of patient forum myth spreading. Some can only be described as propaganda. Some of it even comes from doctors and NET advocate organisations. Myth 1: All Neuroendocrine Tumours are benignNot true. By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'. Sure, some NETs will be benign but a tumours which spreads away…
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Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption]   Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…
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It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, Treatment
5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan.  I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications.  There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can't get my head round why metastases from a small intestinal NET managed to get to this area but not others! Distant nodal metastasis treatment…
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Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

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

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

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer
An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy).  An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out. Gastroscopy During a routine 6 monthly check-up at the end of 2016, I mentioned to…
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Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
OK - we've gone through diagnosis, we've gone through treatment and now we need to live with the consequences of cancer and it's treatment.  Not a day goes by when I don't feel some twinge or some minor pain and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles. It's the cancer .... easy to say, sometimes not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types).  In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in…
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Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

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

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

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION - nothing in here should be taken as advice from the author. On paper, surgery remains the only potentially 'curative' option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get 'twitchy' about any inference of the 'C word' (cure) but our most eminent NET specialists use the term frequently including in the major treatment guidelines.I use the word 'curative' with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life. This is a big…
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Lanreotide vs Octreotide

Lanreotide vs Octreotide

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it can…
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Neuroendocrine – don’t let it be a Crisis

Neuroendocrine – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The word 'crisis' has a wide range of meanings and it's well used in the media to catch the reader's attention. Lately, the terms 'political crisis', financial 'crisis' and 'constitutional crisis' appear almost daily in media headlines. In a previous life, the term 'crisis management' was used daily in the work I was undertaking as I went from problem to problem, dampening or putting out fires (..... that's a metaphor!).  Thinking back, my adrenaline (epinephrine), norepinephrine, and cortisol must have been very busy! However, in the world of Neuroendocrine Tumours (NETs), 'crisis' has a very significant meaning and its very mention will make ears prick up.  The word 'crisis' is normally spoken or written using the term 'Carcinoid Crisis'…
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NET Syndromes – chicken or egg?

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

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION:One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question.  It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease.Going forward I'm mostly intending…
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Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just a note to say Happy Thanksgiving to those who are celebrating it today or any other day in the thanksgiving calendar.  I'm conscious today is mostly celebrated in USA or by those of USA origin and I am really thankful for the support I get from this area which makes up the biggest proportion of subscribers to my blog and associated Facebook page.  So, I'm thinking of y'all today!Turkey and SleepNow ........ I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (... so I'm told!).  And also a nap right after it’s eaten..... right?As you…
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Palliative Care – it might just save your life

Palliative Care – it might just save your life

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

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

Somatostatin Receptors

Awareness, Treatment
Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery and it's come to the top of my list of things to study. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge :-) I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic! Somatostatin It's important to understand this hormone and then why your 'butt dart' is generically called a 'Somatostatin Analogue'. Some Neuroendocrine Tumours secrete hormones…
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What you don’t know might kill you

What you don’t know might kill you

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

Let’s talk about living with NETs

Inspiration, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The…
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The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
 Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once called "Carcinoid Tumors", i.e. mainly serotonin secreting types but include tumours which are well differentiated found in the small intestine, appendiceal, rectal, lung, and one or two other less common places. There are many variations of this list but this is my take! I suspect some of this also applies to…
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Telotristat Ethyl (XERMELO®) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Telotristat Ethyl (XERMELO®) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 1st Aug 2020  updateIn a move that Lexicon Pharmaceuticals Inc. chief Lonnel Coats said will focus the company on its phase II neuropathic pain program, The Woodlands, Texas-based venture has agreed to sell one of its two approved products, the carcinoid syndrome diarrhea therapy Xermelo (telotristat ethyl), to Tersera Therapeutics LLCI don't expect this to make any difference to the drug or its supply.  Business as usual.  The outer package may change to reflect new owners but the brand name XERMELO will most likely be part of the sale. Read the news from Lex Pharma - click here. Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the…
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I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
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Dear Doctors – There’s no such thing as a ‘good’ cancer!

Dear Doctors – There’s no such thing as a ‘good’ cancer!

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings.  However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET).  I can't remember much of the conversation but I vividly remember him indicating that of all the issues out there to get, this was one of the better ones.  He was using a meter analogy action with his hands swinging towards the 'good' reading!  I hadn't gone there that day to receive a…
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Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

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

Treatment
[caption id="attachment_4852" align="alignleft" width="301"] Image with permission from Dr Sam Hare (www.lungdiagnosis.com)[/caption] A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category.  Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages for those who have localised tumours less than 3cm and can't for whatever reason have surgery.  I've checked with…
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My Neuroendocrine Cancer Surgery – a patient experience (part 2)

My Neuroendocrine Cancer Surgery – a patient experience (part 2)

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email   The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.…
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Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2019 changes)

Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2019 changes)

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email One of the most discussed and sometimes confusing subjects on forums is the staging and grading of Neuroendocrine Neoplasms (NENs). Mixing them up is a common error and so it's important to understand the difference despite the apparent complexity. If I was to make a list of questions for my specialist/Oncologist at diagnosis, it would include "What is the stage, grade and differentiation of my cancer". To enable me to synchronise with the documented guidance, I'm going to use the following WHO 2019 approved terms in this post and then provide an update of the key WHO 2019 changes below.Neuroendocrine Neoplasm (NEN) - all types of Neuroendocrine tumour of whatever…
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I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities which have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging.  Even for an experienced doctor, it can be a difficult…
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