MEN1 syndrome - Ronny Allan - Living with Neuroendocrine Cancer

09Oct 2023 by Ronny Allan 7 Comments

Neuroendocrine Cancer: Troublesome Thyroids

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid. At the time, it was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn't seem to fit my scenario - cue relentless study! I've been meaning to write this blog for some time but here is a synopsis of my research translated into 'patient speak'. This is intentionally brief, it's a big subject. I'll finish off with an update on where I…

02Sep 2023 by Ronny Allan 5 Comments

Childhood Cancer Awareness Month – Neuroendocrine Cancer (featuring Elizabeth)

General

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one about NET though. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. I don't know that much about Childhood cancers, but I do know that over half of childhood cancers are either Acute Leukaemias or Brain Cancer, both of which are frequently in the news. It always breaks my heart when I read stories of children with cancer. I do know a…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

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

10Sep 2022 by Ronny Allan 2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, Inspiration

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many children's cancer articles.I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England. An 8-year-old with Paraganglioma had lost an eye due to the location of the tumour. It is absolutely heartbreaking to read but it's amazing how resilient children can be. The Facebook followers were…

03Mar 2022 by Ronny Allan No Comments

A Spotlight on Lung Neuroendocrine Neoplasms

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

WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines. This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book). This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by senior NEN doctors in 2020 to have commonality across all blue books. Neuroendocrine neoplasm update: toward universal nomenclature © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani.I can tell…

23Dec 2020 by Ronny Allan 2 Comments

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

Clinical Trials and Research, 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…

02Oct 2017 by Ronny Allan 10 Comments

Genetics and Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Survivorship

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumors (perhaps along with an associated functional hormone syndrome) and so the genetic condition if there is one, may not be known at this point. [caption id="attachment_14317" align="aligncenter" width="1280"] Overview of genes with recurrent…

28Sep 2016 by Ronny Allan 23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy

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

15Jun 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine Cancer

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

09Mar 2016 by Ronny Allan 4 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer

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

27Oct 2015 by Ronny Allan 25 Comments

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Patient Advocacy

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.Stage vs GradeIn the most basic of terms, stage is the spread or extent of cancer and grade is the aggressiveness of cancer. They are totally different things and an understanding of both is important as they are critical to predicting outcomes (to a certain extent) and guiding therapy. There is no correlation between the two, you can have the lowest grade with the highest stage (actually very common with NETs). Remember S for Stage (Spread), G for Grade (Growing fast or slow)The stage is essentially worked out via scans and biopsy,…

10Aug 2015 by Ronny Allan 16 Comments

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

Awareness

The Syndromes of Neuroendocrine Cancer - Early Signs of a Late Diagnosis One of the curious things about Neuroendocrine Cancer (NETs elsewhere in the text) is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'. Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease". Having a syndrome can often be the difference between having a 'functional' condition or a non-functional' condition - see more below. This frequently makes Neuroendocrine Cancer very difficult to diagnose quickly. It's a very devious disease. It's NOT all about Carcinoid Syndrome! Most people think of Carcinoid Syndrome when they discuss NETs. Anyone suggesting that all…

Tag: MEN1 syndrome