09Mar 2023 by Ronny Allan 1 Comment
A tribute to the life and legacy of Miranda Filmer

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials, Inspiration
It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that.  But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease.  There are others but I find these are the most common scenarios I see in younger people.  For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death.  It…
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23Aug 2022 by Ronny Allan 1 Comment
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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09May 2019 by Ronny Allan 5 Comments
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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27Oct 2015 by Ronny Allan 25 Comments
Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

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 Grade In 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) As patients, we deal with many medical…
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