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

Grading and Staging 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. 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 grade (please note Neoplasm is another word for tumour)Neuroendocrine Tumour (NET) - all well-differentiated tumours, Grade 1,2 or 3 (an…
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Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy
OPINIONThere's a constant debate regarding the validity of the term 'Carcinoid'.  I've posted about this a few times and as far as I know, the debate has been raging for some years.EDIT MARCH 2022.  The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice - the WHO Lung Committee bottled it.  I made my choice some years ago, I hope others follow suit.  Read more about changes to Lung NEN by clicking here. EDIT APRIL 2020.  The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) - read more - click hereEdit May 2020.  So, what about other areas not included in GEPNETs above? Please note there…
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