Bowel cancer - Ronny Allan - Living with Neuroendocrine Cancer

04Jan 2021 by Ronny Allan No Comments

The Invisibility of Appendiceal and Colorectal NETs – do the math

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. …

03Sep 2018 by Ronny Allan 14 Comments

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 that 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 type?I…

11Sep 2017 by Ronny Allan 7 Comments

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Awareness

BackgroundWhen you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness.Cancer CategoriesFrom a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories:CarcinomaSarcomaMyelomaLeukemiaLymphomaMixed TypesYou may be like me and wondering where Neuroendocrine Tumours fit into these 6 types? Clearly, they must be somewhere inside Carcinoma ...... and that must refer back to the Oberndorfer "Carcinoma-like" term, something which is translated from "Carcinoid". As Carcinoid has been erased from the vast majority of WHO Cancer Classification 'blue…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

10Nov 2014 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Inspiration, Patient Advocacy, Survivorship

Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…

03Nov 2014 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding.One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of this…

20May 2014 by Ronny Allan 1 Comment

Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment

I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog. I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…