A blog by Ronny Allan

Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

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.

I wanted to cover the main terms below, where necessary bringing in commonly used synonyms which can mean more or less the same thing.  I’m not suggesting the use of these synonyms are a bad thing because the official terms do need bringing into the 21st century.


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.

  1. 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.
  2. 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

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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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By Ronny AllanOn 2 Comments
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By Ronny Allan

Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.

2 thoughts on “Neuroendocrine Cancer – remission, cancer-free, no evidence of disease”

  • Dan

    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!

    Reply

    • 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.

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