February, 2016 - Ronny Allan - Living with Neuroendocrine Cancer

25Feb 2016 by Ronny Allan 4 Comments

Carcinoid – What’s in a name?

Awareness

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion (..... and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017. The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla…

18Feb 2016 by Ronny Allan 12 Comments

Patient power – use it!

Inspiration, Patient Advocacy

[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors. However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication. The blog then commented on a number of tips for better doctor-patient relationship and communication. These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…

15Feb 2016 by Ronny Allan 6 Comments

Sometimes you just gotta climb that hill!

Inspiration

[caption id="attachment_31064" align="aligncenter" width="640"] Scene from Rocky?[/caption] It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?" Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much colder! However, the 'euphoric high' was worth it. It was like medicine healing the mind. [caption id="attachment_4988" align="aligncenter" width="535"] Go on, climb…

11Feb 2016 by Ronny Allan 12 Comments

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.However, people with less common conditions can perhaps be more difficult to satisfy. A 'generalist' doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at the…

02Feb 2016 by Ronny Allan 21 Comments

Neuroendocrine Cancer – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with " ... perhaps just months ........". That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife Chris heard it all and I was refocused. "OK Doc - let's go" I said. Always take someone with you to take notes at important meetings with…