Carcinoid - Ronny Allan - Living with Neuroendocrine Cancer

Tag: Carcinoid

From the german word ‘Karzinoide’. In 1907, Siegfried Obendorfer (1876–1944), a German pathologist at the University of Munich, coined the term karzinoide, or “carcinoma-like”, to describe the unique feature of behaving like a benign tumor despite resembling a carcinoma microscopically

See Carcinoid Tumour
See Carcinoid Syndrome
See Carcinoid Crisis
See Carcinoid Heart Disease

Please note the term Carcinoid Tumour has been removed (or has been recommended to be removed) from the World Health Organisation’s classification system and replaced by Neuroendocrine Tumour. Read more here

02Dec 2023 by Ronny Allan 2 Comments

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Clinical Trials and Research

I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease (US FDA wording, Europe is similar). What is this trial? This phase II trial studies the effect of lutetium Lu 177 dotatate compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive bronchial neuroendocrine tumors that have spread to other places in the body (advanced). Radioactive drugs, such as lutetium Lu 177 dotatate, may carry radiation directly to tumor cells and may reduce harm to normal cells. Lutetium Lu 177 dotatate may be more effective…

06Jun 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Awareness is key, but it must be the right message

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. A recent ASCO publication suggested the perceived rarity of NETs is holding back clinical research and in the same paragraph, also stated that NETs are uncommon but definitely not rare). It's no secret that I have been fairly 'pushy' for some years on this subject, and I will continue to…

25Oct 2021 by Ronny Allan 1 Comment

Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness

On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Where do I start ........ well, there are three main things wrong with Neuroendocrine Cancer awareness. Ancient Misnomers1. The community remains entrenched in 1907 terminology which needs to be brought into 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms. If clinicians, scientific organisations (including pharma and clinicians regional societies), and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us. We need to do all we can to remove the…

17Oct 2021 by Ronny Allan No Comments

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials and Research, Patient Advocacy, Treatment

I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors". He quotes from a 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes…

04Feb 2021 by Ronny Allan 2 Comments

Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness

On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness: If the community does not address these 3 issues, awareness will continue to fail and continue to flounder. I standby to help with the change, in fact, my work started in 2015 and continues. 1. To be told your cancer isn't really cancer is an insult.2. To be called an animal is to be dehumanised. 3. To be rare when you're not, is a step back and is hindering access to clinical trial research. WE NEED A NEW PARADIGM. First thing wrongThe community remains entrenched in 1907 terminology which needs to be brought into 2021. Things have moved on so much but the use of this ancient terminology and what it…

04Jan 2021 by Ronny Allan No Comments

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy

Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data. For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are recommended screening. Colorectal covers the large intestine including the sigmoid colon and rectal cases. You can read this article from the National Institute of Health covering the issue in US. …

01Dec 2020 by Ronny Allan 15 Comments

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million! Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 2 million: whilst accumulating around 20,000 followers across all my social media…

22Apr 2015 by Ronny Allan 41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy

OPINION There'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 here Edit May 2020. So, what about other areas not included in…