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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