RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment
ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost.  It takes 3-4 years to get a million hits based on current performance.  To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened!  I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth.  2020 and 2021 were slower than normal but 2022 has seen some pickup.  Some of it is due to less writing but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….).   2022…
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Neuroendocrine Cancer:  Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

Awareness
An awareness post from Ronny Allan BEWARE There are a lot of scary diseases in this world.  Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer.  Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen.  Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones,…
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Neuroendocrine Cancer:  Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A.  Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A to Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary, and ensuring all definitions…
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A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)

Clinical Trials
A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)Neuroendocrine Neoplasms are considered solid tumours.Imugene Limited, a clinical-stage immuno-oncology company, and City of Hope, one of the largest cancer research and treatment organizations in the United States, today announced that the first patient was dosed in Phase 1 clinical trial evaluating the safety of novel cancer-killing virus CF33-hNIS VAXINIA when used in people with advanced solid tumors. The City of Hope-developed oncolytic virus has been shown to shrink colon, lung, breast, ovarian and pancreatic cancer tumors in preclinical laboratory and animal models.Interestingly, the principal investigator is listed as a NET Specialist. No conclusions should be drawn from this knowledge, and I have no information to suggest…
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Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin  for prognostication in patients with neuroendocrine neoplasms

Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms

Clinical Trials
August 25, 2022 -- A new gallium-68 PET radiotracer appears effective for predicting higher risk of disease progression and mortality in patients with neuroendocrine tumors, according to a study published August 18 in the Journal of Nuclear Medicine. Conclusion: Tumor lesion uptake of 68Ga-NODAGA-E[c(RGDyK)]2 was evident in patients with all grades of NEN. High uptake was associated with a poorer prognosis. Further studies are warranted to establish if 68Ga-NODAGA-E[c(RGDyK)]2 PET/CT may become a prediction tool for identification of patients eligible for treatments targeting integrin αvβ3. Why is this different to regular Ga68 Dotatate?  In the simplest of terms, Ga68 Dotatate is targeting somatostatin receptors which are known to be expressed by most NETs, it can help indicate if treatment using somatostatin analogue therapy is feasible.  Integrin αvβ3 recognizing cell surface integrins is upregulated on endothelial…
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Neuroendocrine Cancer: At least 50 shades of grey

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. Even within the community, so many people make blanket statements about Neuroendocrine Cancer which are misleading, e.g."they're all…
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The trouble with the NET is that it can spread ……. false hope

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy
Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area.  I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my patient group and on my public pages.  Annoyingly, some of it comes from unsuspecting patients who are simply sharing it from another place.  People need to think carefully before sharing this sort of thing.  It's…
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The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global pandemic and all that follows and it's throwing fuel on those fires. The COVID-19 pandemic has added another layer of complexity to the fears of NET patients. Inability to travel,…
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Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

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

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Opinion PostI've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer".  The answer is almost impossible.  Here are a few of the reasons why these things get muddled:1. Not everyone has access to a NET specialist, let alone a Dietitian who specialises in NET. So, they come to patient groups to ask about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. 2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with…
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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…
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Every picture tells a story (point, click, read)

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

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…
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Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials, Patient Advocacy
It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could have access to a new tool to be able to home in on a particular location.DNA methylation-based profiling is now routinely used in the diagnostic workup of brain tumors but…
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Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials, Treatment
Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI).  You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular enzyme and keeps tumors from making their own blood vessels, which are needed to deliver oxygen and other nutrients to help them survive and grow. In clinical trials, SUTENT was…
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Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials, Treatment
Click picture to read the A to Z of Neuroendocrine Cancer What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down.  The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer.The drug is administered in oral form (tablet). The recommended dose for AFINITOR® (everolimus) Tablets is one 10-mg tablet once daily but lower doses of 7.5-mg tablets, 5-mg tablets, and 2.5-mg tablets are…
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Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email sharing this could help someone 2019 has been quite a year and my blog views are the highest they have ever been.  They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year.  Will try harder in 2020! (edit - COVID changed those plans)Things are so hectic I might need to think about more resources for my website/blog going forward.  Much of the effort in 2019 has been directed in building up my private group, the fastest growing NET group on earth and based on current size and growth rate, it will soon…
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Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy
When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused. “OK Doc – let’s go” I said. Always take someone with you to take notes at important meetings with Oncologists!…
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Clinical Trials of PV-10 (Rose Bengal) for the treatment of Neuroendocrine Tumours (NET)

Clinical Trials of PV-10 (Rose Bengal) for the treatment of Neuroendocrine Tumours (NET)

Clinical Trials
Reviewed and edited 17th March 2022Provectus Biopharmaceuticals Announces Presentation of Full Study Data from Metastatic Neuroendocrine Cancer Phase 1 Trial of PV-10® at ENETS Conference 2022Provectus (OTCQB: PVCT) today announced that data from an ongoing clinical trial of investigational cancer immunotherapy PV-10 (rose bengal sodium) for the treatment of neuroendocrine tumors (NET) metastatic to the liver (mNET) refractory to somatostatin analogs (SSAs) and peptide receptor radionuclide therapy (PRRT) (NCT02693067) was presented at the annual conference of the European Neuroendocrine Tumor Society (ENETS), held from March 10-11, 2022 in a hybrid setting in Barcelona, Spain and online.The oral presentation was made by the principal investigator of the clinical trial’s single center at The Queen Elizabeth Hospital (TQEH) in Adelaide, Australia: Tim Price, MBBS, DHlthSc (Medicine), FRACP, Head of Clinical Oncology Research…
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The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

Awareness, Patient Advocacy
Reviewed and updated 14th March 2022High 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…
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From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy
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…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness
On 8th July 2010, I was sat in front of a secondary care consultant. 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 tests ordered by a nurse following a routine visit to my local medical centre (....... "I think I've lost a bit of weight").  My haemoglobin…
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Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Clinical Trials
What exactly are Oncolytic Viruses?Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs, one directly and one indirectly.Added 24th September 2022. A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)Neuroendocrine Neoplasms are considered…
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Ronny Allan – Top 6 posts of 2017

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis…
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Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it 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 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 (and even these can be said to be quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for…
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Living with #Cancer – if you’re reading this, you’re surviving

Living with #Cancer – if you’re reading this, you’re surviving

Inspiration, Living with Neuroendocrine Cancer, Survivorship
You may sometimes feel like you're not surviving but if you're reading this then you most definitely must be! For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was going to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) - well done NCSD.Org - you should check out the site and sign up for their newsletter What is…
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Detective Doctors

Detective Doctors

Awareness
Share this post please The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause.  Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues.  There are…
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Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

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