This subject comes up a lot in patient groups. The heterogeneity of Neuroendocrine Neoplasms (a term for both well differentiated NET and poorly differentiated NEC) tends to be forgotten as people start to make blanket statements as if it applies to every single NET patient. It becomes a rather circular discussion where certain readers might even be unnecessarily misled about their outcome casually suggested by someone who knows nothing about their diagnostic and treatment history. Part of the problem is the official cancer terms built in the 1970s remain in use today, but they do not fit the vast changes that have occurred in cancer survival and treatment for incurable types. Consequently, specialists are generating new and informal terms, more individualised, when passing on updates to their patients. Some non-official or informal terms are just synonyms of published and universally accepted terms but are provided with more context to bring it up to date.
Cure
I once wrote an article called “Neuroendocrine Cancer – can it be cured“. In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be. At the other end of the scale, I covered guidelines where doctors talk about removing tumours with “curative intent”, clearly in reference to small localized tumour scenarios. I’m pretty sure in my own mind that this does happen. As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing “no follow up” related to size and margin pathology score. However, in one sentence, “cure” generally means that there are no traces of your cancer after treatment and cancer will never come back. That’s a pretty big statement that seems impossible to predict in every single cancer patient. I guess doctors tread carefully before saying the word ‘cured‘. Epidemiology data plays a big part in decisions on how to guide doctors and manage patient expectations, i.e. based on the data collected over a period of years, doctors are able to assess the likelihood of a recurrence (as inferred above). For some doctors, I suspect they also base this on what they see in their own practices, at least in the larger hospitals seeing hundreds or thousands of patients over a period of time. When I read comments from members of my patient group, the lack of a standard is obvious. Words such as “stable“, “no evidence of disease” and “cancer free” are frequently used. Less quoted are terms such as “remission” or “cured“. I myself am “reassuringly stable” with “no evidence of progressive disease“.
What does remission actually mean?
I looked at various sources and they all appear to say the same thing. Most sites you find will say something like this extract below, although I have added informed comments from one of my ‘Go To’ physician sources where there is always context rather than the bland statements from national cancer organisations:
Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete.
- Partial remission means the cancer is still there, but your tumour has gotten smaller, or you have less cancer throughout your body. Some doctors tell patients to think of their cancer as “chronic,” (author’s note: and this is relevant to locally advanced or metastatic Neuroendocrine Tumours (NETs). It’s something you may need to continue to check. If you’re in partial remission, it may mean you can take a break from treatment (where applicable) as long as the cancer doesn’t begin to grow again.
- Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” However, that doesn’t mean you are cured. Doctors can only make these statements based on their imaging (i.e. what can be seen by imaging) or suggested by other tests. But there is still a chance that cancer will come back later. For this reason, doctors cannot say for sure that you are cured. The most they can say is that there are no signs of cancer at this time (e.g. “No evidence of disease”).
If you remain in complete remission for 5 years* or more, some doctors may discharge you saying you are “cured” but I suspect they mean ‘unlikely to return’ as cancers that return, most do so within the first 5 years after treatment. In scenarios where there is a higher chance of recurrence, your doctor may monitor you for many years and do tests to look for signs of cancer’s return. Hopefully, in that time, they will also look for signs of late side effects from the cancer treatments you received (an area that perhaps needs more attention?). Another synonym is “cancer free” but that needs added context.
*Interest point. As an indication that words are becoming more personalised, some cancer types have smaller or larger remission checkpoints due to known behaviours collected over the long term. Most NET guidelines state 10 years minimum for surveillance, and then clinical judgement after that. When I got 10 years, my surveillance intervals were changed to 1 year (e.g. my CT scan was extended from 6 months to 12 months due to ‘stable disease’. I’m just one example of a Stage IV grade 2 small intestine NET diagnosed in 2010 but with ‘evidence of indolent remnant disease’).
Recurrence
I think it’s worth including this definition as it overlaps with the remission definitions. Some cancer cells can remain unnoticed in the body for years after treatment. If cancer returns after it has been in remission, it’s called a “recurrence.” Cancer can recur in the same place it was originally diagnosed, or it can recur in a different part of the body. It’s normal to be concerned that this will happen to you. Every situation is different, and there’s no way to predict what will happen.
Summary
For some in the Neuroendocrine patient community, this is both a controversial and emotional subject, understandably so. However, it is not helped by the ‘blanket statements’ continually made about all types of Neuroendocrine Cancer (Neoplasms) when they only really apply to a subset. Neuroendocrine Neoplasms are a heterogenous collection of cancers and this heterogeneity applies in various other ways, not just in the classification of the disease. Some group owners need to look at how they moderate these often-circular discussions. Some people introduce the subject of “micrometastases” which in some cases might be scary to some people causing totally unnecessary anxiety. Just because micrometastases can’t be seen, does not mean they are actually there. NET specialists should have a handle on which type of NET are more likely to recur than others although this is very individualised. The remission and stable definitions above apply regardless.
Other than the general cancer definitions I’ve quoted below, there is no real standard for what a doctor should say to a patient at relevant points in their surveillance in terms of the future, this really is not an exact science. I believe it has to be understood that this is really pretty much the way things are and thus why words need to be carefully thought through before being uttered.
But whatever is said to a patient, these words are really important, as is the context in which they are said. Consequently, it’s important to ask the oncologist or specialist specifically what they mean. Because one doctor may use any of them one way, and another doctor might use them in another context.
I personally think for those with more advanced Neuroendocrine Cancers (i.e. higher stages), as long as you continue to get surveillance, access to therapy (without insurance-based constraints where this is applicable), these terms then become less significant.
Thanks for listening.
On the Cancer Journey, don’t forget to live your life – Ronny Allan – Living with Neuroendocrine Cancer
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.
Thanks for reading.
Click here and answer all questions to join my private Facebook group
Facebook – Neuroendocrine Cancer
X (twitter) – Ronny Allan
Website
Instagram
Ronny
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
- Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by your NET. Vitamin D deficiency is widespread in the general population, particularly in northern latitudes, older adults, and people with limited sun exposure. However, NET patients accumulate multiple, well‑recognised risk factors,… Read more: Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol) - Cancer: Words are important but so is context
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… Read more: Cancer: Words are important but so is context - Newsletter covering January and February 2026
Overview Many thanks for the support in January and February 2026. This is a double month newsletter due to my 27 day holiday! 2026 Blog Activity for January and February Actually, despite my holiday figures are pretty much normal. I had a great month in December 2025, perhaps I was overperforming as I was anticipating… Read more: Newsletter covering January and February 2026 - Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)
Vitamin B12 deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) – what that means is there is a chance your deficiency as a NET patients may not be related to your NET. However, it’s a fairly common comorbidity reported in NET patients and it’s important to note the mechanisms differ by primary… Read more: Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin) - Sometimes you gotta climb that bridge!
When I was a young lad, I didn’t seem to have a fear of heights, not that I got many chances to test it but a couple of things springs to mind. As a ‘feral youth’ I once climbed to the top of a factory building without fear. I won’t divulge any further detail, just… Read more: Sometimes you gotta climb that bridge! - 50 years of marriage – in sickness and in health
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there’s a lot of milestones I doubted I would reach. One is today and I can now tick off another and be thankful for reaching it. I have been married to a kind and beautiful lady for 50 years on – 29th March 2025. I’ve… Read more: 50 years of marriage – in sickness and in health - Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311)
A Phase 2/3, Multicenter, Randomized Open-Label Study of Zanzalintinib vs Everolimus in Participants With Previously Treated, Unresectable, Locally Advanced or Metastatic Neuroendocrine Tumors. The primary purpose of this study is to assess the effectiveness of zanzalintinib compared to everolimus in participants with previously treated, unresectable, locally advanced or metastatic neuroendocrine tumors. Zanzalintinib (XL092) is an investigational,… Read more: Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311) - Next Generation Total-Body PET/CT: Challenges and Opportunities
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide more detailed imaging and acquire PET images in a single bed position. Indeed, vertex to thigh imaging for oncological indications can be obtained in most of the population with the… Read more: Next Generation Total-Body PET/CT: Challenges and Opportunities - Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the news – click here Clinical Trial Document – click here Limited to US (6 locations) (so far). CRN09682, a first‑in‑class non‑peptide drug conjugate (NDC) developed by Crinetics Pharmaceuticals. The company… Read more: Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors - Ronny Allan – a review of my blog activity December 2025
Here is the monthly summary of December 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. December is normally a quiet month, often the quietist month of the year. However, this year, it was the best figures for the whole of 2025. … Read more: Ronny Allan – a review of my blog activity December 2025 - A review of 2025 on RonnyAllan.NET
Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my advocacy work. I had to spend quite a bit of time looking after my brother’s affairs when he was diagnosed with dementia and is now living in residential care. That… Read more: A review of 2025 on RonnyAllan.NET - 15 years of Christmas!
15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced Neuroendocrine Cancer. I had been out of hospital for only 4 weeks following major surgery in 2010. I remember the whole of my own family attended, my son and daughter’s… Read more: 15 years of Christmas! - Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac
A Global first for NET. Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia. According to Professor Michael Hofman, they have been using the camera for a couple weeks and it is exceeding their expectations. They’re running a short trial comparing results against regular PETs. The great news is that… Read more: Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac - Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a low ki67 figure from a tissue sample taken percutaneously from my liver, it seemed pretty good that I was only 5 in a range of 0-100 but somehow the word… Read more: Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts sent to your email.
Thanks for your writings!
I don’t like the term NED being applied to NET patients. I think the medical community should adopt the term NEAT–No Evidence of Active Tumors. I think NED is interpreted as you no longer have cancer. Wrong!
I get where you’re coming from. Personally I think the medical profession needs to come up with more modern terms for today’s cancer where people can live longer, even in a stable condition (stable means no change to disease status). I think “evidence” is the word that we need to focus on, so if any test is not finding “evidence” of disease, then doctors just can’t assume or guess that it is still there. However, they do have experience of treating people who have had recurrence so I guess that drives a surveillance regime to follow. Statistics play a part in that and due to the heterogenous nature of NET, clearly risks are higher or lower depending on which type of NET they deal with. My own oncologist described by status as “no evidence of progressive disease”, my interpretation of that is that they can see something they consider to be disease but it has not really changed since the last scan or series of scans.