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.
Disclaimer
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.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
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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Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.November 29, 2016Inspiration
Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny AllanOctober 30, 2017Awareness
- Spotlight on Ovarian Neuroendocrine Neoplasms
Disclaimer:The information in this Spotlight is provided for general information and education only. It is not intended to replace the advice of a qualified healthcare professional, nor to be used for diagnosis or treatment of any medical condition. Always discuss your individual situation, symptoms, test results, and treatment options with your own doctor or… Read more: Spotlight on Ovarian Neuroendocrine Neoplasms - Ronny Allan’s Newsletter covering May 2026
Just back from holiday thus why the late publication! Summary of May 2026 on RonnyAllan.NET I think the main story of May is similar to March and April which was a strong blog performance. Other key targets met were the two main primary NET types (small intestine and pancreas) and one not so common(thymus) have finally been… Read more: Ronny Allan’s Newsletter covering May 2026 - Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Introduction: What Are Fat‑Soluble Vitamins? Fat‑soluble vitamins — A, D, E and K — are nutrients that can only be absorbed when dietary fat is digested properly. They… Read more: Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)
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 concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate) - Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)
🟧A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information about Vitamin E. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion or absorption. Always consult your medical team before making changes to supplements or nutrition. What is Vitamin E? Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols) - Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)
Disclaimer: This Spotlight provides general educational information about Vitamin A. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or liver function. Always consult your medical team before making changes to supplements or nutrition. 🟧A general‑population overview with NET‑specific considerations where relevant. What is Vitamin… Read more: Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol) - 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Two hundred injections. It’s a milestone that carries weight — not because of the number itself, but because of what it represents: continuity, stability, and the lived reality of managing Neuroendocrine Cancer over the long term. Lanreotide has been part of my life… Read more: 200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management - Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)
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 concerns… Read more: Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones) - A spotlight on Colon Neuroendocrine Neoplasms
Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing… Read more: A spotlight on Colon Neuroendocrine Neoplasms - Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team,… Read more: Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) - An unmissable update from Ronny Allan covering April 2026
A monthly update not to miss……..Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance. Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the… Read more: An unmissable update from Ronny Allan covering April 2026 - Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or… Read more: Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
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