Syndrome – Ronny Allan – Living with Neuroendocrine Cancer

15Oct 2023 by Ronny Allan 11 Comments

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Awareness

Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! [caption id="attachment_35516" align="aligncenter" width="640"] Click to read my own story[/caption] In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing,…

03Apr 2023 by Ronny Allan 4 Comments

Neuroendocrine Cancer: oh yes, it’s the great pretender

Awareness, Patient Advocacy

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment.It was hidingBut it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time?I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and documented. But despite my late stage and advanced diagnosis, some people were not as fortunate as me, an observant and efficient nurse sent me for blood tests, one thing or another led to…

18Nov 2016 by Ronny Allan 11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness in which many people survive. As survival rates increase, so too will the number of people who live with the legacy of…

25May 2016 by Ronny Allan 5 Comments

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once called "Carcinoid Tumors", i.e. predominately serotonin secreting types which mainly metastatic cases where the well differentiated tumours are found in the small intestine, but much less commonly in appendiceal, very rarely in rectal (rarely even at stage IV), lung (more atypical and around 10%), and one or two other significantly less…

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