Zebra - Ronny Allan - Living with Neuroendocrine Cancer

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…

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…

15Dec 2015 by Ronny Allan 7 Comments

Not all cancers are black, white, blue, pink – some are very grey

Awareness

OPINION Over the last few years, I've seen quite a few posts entitled "Not all Cancer is pink". I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is another thing Those who use this phrase are perhaps concerned there is an imbalance and inherent unfairness in the distribution of support and are frustrated that their own cancer does not fare as well publicly. I share that frustration; however, I take my hat off to the battalions of advocates, bloggers and organisations who work very hard for breast and the various gynaecological cancers whether they push pink or not - and for the record, they don't all push or even agree…

18Sep 2015 by Ronny Allan 32 Comments

Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century

Awareness

OPINIONThe build up to (so called) NET Cancer Day has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more likely be taken seriously and attract new audiences? p.s. even our day has a ridiculous name - "NET Cancer" decodes to "Neuroendocrine Tumour Cancer" which is quite ludicrous not only because of the grammar but also because it precludes a whole bunch of people from the Neuroendocrine Carcinoma area of the disease. The term World Neuroendocrine Cancer Day is so much betterFor those unaware, the term 'Zebra'…

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