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
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy
Reviewed and updated 30th May 2023High Grade Neuroendocrine Neoplasms - 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…
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16Mar 2018 by Ronny Allan 5 Comments
Irrfan Khan

Irrfan Khan

Awareness
Credit: Getty Images Irrfan Khan died in Mumbai India 29 Apr 2020 after being admitted to hospital for a "colon infection" according to many news reports. However, The Times of India wrote about Khan’s colon infection, saying it may have resulted from cancer treatments.  Sadly, Irrfan's mother died 3 days earlier but he was unable to attend her last rites owing to India's nationwide coronavirus lockdown restricting citizens' movements at that time. Namaste Irrfan  Irrfan Khan, known simply as Irrfan was an Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of Pi, Jurassic World, The Amazing Spider-Man, was diagnosed with Neuroendocrine Cancer in 2018.What type of NET?Irrfan released information on 19 June 2018 indicating it was a high grade Neuroendocrine Cancer - although there is no detail of the…
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14Aug 2017 by Ronny Allan 18 Comments
The Invisible NET Patient Population 

The Invisible NET Patient Population 

Awareness
OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine Neoplasms – not as rare as you think". However, most things I read indicate the figures were understated (words used by several NET specialists.  Despite this date now being 8 years…
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