Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can’t doctors just tell me in layman’s language? Easy answer ……. because it is not an exact science. Doctors are not robots (…… yet!), they are human beings just like us. Doctors have different views and they can have different interpretations of long standing terms ingrained in the annals of medicine. Some doctors have better patient communication. They don’t have crystal balls, but they do really care and sometimes that’s what matters more.
One of the main stumbling blocks I find is that ‘cancer language’ has fallen behind science. People live longer with cancer nowadays with some cancers being described as having a chronic illness. But the words used to describe the effect of treatment or prognosis has not kept up – thus we hear fairly antique phrases which just don’t fit modern medicine. In the context of NET, I tried to analyse and decode that – read my post “Cure vs Remission vs No Evidence of Disease (NED)“. I stuck to the ingrained words I referred to above.
My own example.
Sure, I was told stage IV and incurable – pretty standard description even today. But I had advanced cancer (and still do today) but you simply cannot compare me with a small localised stage 1 Grade 1 appendix tumour which was removed with curative intent and showed clear margins. The selection of appendix is not intentional, I could have picked other NET primary types known not to frequently metastasise. And yet people do try to make the exact comparison in my group – totally ignoring the heterogeneity of NETs.
I then started to write about words that have been used by my own oncologist during surveillance periods – “stable” which was later described as “reassuringly stable“. The addition of that adjective is meaningful, perhaps more than ‘stable’. But the kicker to some might be that he also talked about ‘evidence of disease’ which threw some of the readers who perhaps thought it an oxymoron – a figure of speech in which apparently contradictory terms appear in conjunction, i.e. How can I be stable but with evidence of disease (ED)? The easy answer is because the disease which is evident is not doing much. The hard bit is finding the right medical term which people understand. It was validation of the “Cure vs Remission vs No Evidence of Disease (NED) blog as the answer is probably in there but with a pragmatic approach to interpretation – Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete and Partial remission means the cancer is still there, but your tumour has gotten smaller, or you have less cancer throughout your body. A lot of people use NED (no evidence of disease) but when you look at Full Remission definition you can see complications there, albeit it does look like they are synonyms. And clearly, NED is not a match for ‘evidence of disease but stable’.
Perhaps my Oncologist read my blog and decided to spice it up a bit. In 2024, he then awarded me with the accolades of “No evidence of progressive disease” and “reassuringly stable” Now we’re talking as those words mean a lot to me!
One day, medical parlance ingrained in the annals of medicine might actually catch up with the reality of cancer in 2026.
Finally, don’t interpret this post as ‘gung ho’ on my part. My situation might change tomorrow or at my next surveillance checkpoint. I’ll cross that bridge if and when I get to it.
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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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FDA has approved lutetium Lu 177 dotatate injection (Bexlutry) for the treatment of adult patients with SSTR+ GEP-NETsJuly 11, 2024Patient Advocacy
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)March 11, 2024Patient Advocacy
Neuroendocrine Cancer – If you can see it, you can detect it!January 14, 2025Living with Neuroendocrine Cancer
- Ronny Allan’s Newsletter covering August 2026
Summary of August 2026 on RonnyAllan.NET August was similar to the other months of this year but like July, views are down on the previous two months due to 50% of the month spent on holiday. Still a reasonable blog performance – I can’t complain. Other key targets met were three more editions of the Spotlight… Read more: Ronny Allan’s Newsletter covering August 2026 - External Beam Radiation Therapy (EBRT) for Neuroendocrine Neoplasms
Disclaimer: The information in this section is for education only and does not represent a standard care pathway or service. These treatments are not suitable for everyone, and careful patient selection by an experienced multidisciplinary team is essential. Always discuss your individual situation with your own specialist team. External Beam Radiation Therapy (EBRT) is… Read more: External Beam Radiation Therapy (EBRT) for Neuroendocrine Neoplasms - 2026 Surveillance Update from Ronny Allan: “See you in 12 months”
It’s only a couple of weeks since I celebrated my 16th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2 on 26th July 2010. Thinking back to that period of my life, I’m happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at… Read more: 2026 Surveillance Update from Ronny Allan: “See you in 12 months” - Spotlight: Selenium in Neuroendocrine Tumours (NETs)
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET‑related factors might influence them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs vary widely. If you… Read more: Spotlight: Selenium in Neuroendocrine Tumours (NETs) - Spotlight: Potassium in Neuroendocrine Tumours (NETs)
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.… Read more: Spotlight: Potassium in Neuroendocrine Tumours (NETs) - Spotlight: Magnesium in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you… Read more: Spotlight: Magnesium in Neuroendocrine Tumours (NETs) - Ronny Allan’s Newsletter covering July 2026
Summary of July 2026 on RonnyAllan.NET July was similar to the other months of this year but views down on the previous two months due to 50% of the month spent on holiday. Still a reasonable blog performance. Other key targets met were three more editions of the Spotlight series on vitamins and minerals. See… Read more: Ronny Allan’s Newsletter covering July 2026 - 16 years since diagnosis, I’m still here
I finally made 16 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help […]
- Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms
Intro Cushing’s syndrome is one of the most challenging hormonal complications seen in people with neuroendocrine neoplasms (NENs). It can be subtle, severe, or even life‑threatening — and it is often misunderstood. Many patients struggle for months or years before receiving a correct diagnosis, partly because the symptoms overlap with everyday conditions such as weight… Read more: Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms - 14th July 2026 – Ronny Allan hits 3 million blog views!
Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing. When I first set up this blog in April 2014, it was just to help spread awareness (….and collect a few pennies) whilst I was walking the 84 miles of… Read more: 14th July 2026 – Ronny Allan hits 3 million blog views! - Spotlight: Zinc in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have… Read more: Spotlight: Zinc in Neuroendocrine Tumours (NETs) - Neuroendocrine Tumours – Iron
Disclaimer: This Spotlight provides general educational information about Iron. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or chronic blood loss. Always consult your medical team before making changes to supplements or nutrition. Before I knew I had metastatic Neuroendocrine Tumours, I was diagnosed… Read more: Neuroendocrine Tumours – Iron
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