October, 2015 - Ronny Allan - Living with Neuroendocrine Cancer

27Oct 2015 by Ronny Allan 25 Comments

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

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…

22Oct 2015 by Ronny Allan 7 Comments

Your Money or Your Life

Inspiration, Survivorship, Treatment

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients. I've been following her story for almost 2 years and she has really inspired me. The title of this article is based on the title of a TV programme about her and her campaign to gain access to new drugs. I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly. RIP…

19Oct 2015 by Ronny Allan 28 Comments

Scanxiety – I just don’t get it!

Inspiration, Survivorship

OPINIONThe internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying 'blood-testxiety' or 'biopsyxiety'. Why just scans?‘Scanxiety’ - I just don't get it ......or more accurately I just don't get overly anxious about having a scan…

15Oct 2015 by Ronny Allan 16 Comments

Not all Cancer is simple

General

[caption id="attachment_4135" align="alignleft" width="670"] Not all Cancer is simple[/caption] So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below). Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with other conditions often with debilitating symptoms. Once diagnosed, surgery (if it's possible) is just one of a number of treatment options…

08Oct 2015 by Ronny Allan 4 Comments

Other people get cancer, not me

Inspiration, Treatment

Denial I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.So why was I admitted to hospital during the diagnostic phase? Because I was stupid. In fact I was double-stupid. Firstly, despite having had to undergo a liver biopsy and…

05Oct 2015 by Ronny Allan 7 Comments

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

BackgroundNeuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…