In every surveillance session I’ve had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to “stable“.
After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable! In 2023, I was given the headline of “No evidence of progressive disease at any site” (i.e. stable).
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; some doctors have better patient communication. They don’t have crystal balls, but they do really care and sometimes that’s what matters more. Read my post “Cure vs Remission vs No Evidence of Disease (NED)“.
The title of this blog post sounds like a bit of a conundrum, some might call it an oxymoron. How can I be stable but with evidence of disease (ED)? I’m sure there are some people (including other patients) who think I should get my doctors to search out the remnant disease and then cut it, burn it freeze it, or poison it. Whatever you do, just get rid of it. It’s not as simple as that, if you try to get every single speck of disease, you may not have much tissue left and you may reduce your quality of life. I’m happy to wait until they tell me it’s something threatening my mortality and/or my quality of life.
I see so many individual and differing points of view in my private Facebook group, it just confirms my own view that this is not an exact science. But also, we are all different shades of NET, just like NET doctors.
p.s. I love to hear people being declared “NED” or “stable”.
For now, I’ll continue with my ‘ED’ label and crack on with life. After all, I’ve been stable with ‘ED’ for 11 years now!
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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Please Share this post for Neuroendocrine Cancer awareness and to help another patient
- Small tumours – big impact
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Reassuringly stable sounds great before your holiday. I’m getting my six monthly MRI and bloodwork tomorrow here at the Mayo Clinic Phoenix. See the oncologist next week. Hope my results are also RS. Your blog has been my comfort through this unexpected health challenge. Thanks fellow Brit for sharing as you do. Susan
Thanks and best wishes for today!
So Happy for you and thank you for all the work you do.
Thanks and best wishes!
I totally agree, Ronnie, and hope to receive similar news next week.
thanks and best wishes for next week!
Sorry for misspelling your name, Ronny!
Reading my oncologist”s report( after my 38th lan retire injection- stable- I find myself strangely amused by seeing one NET described as a ” tumorlet.”
Just means small cluster of cells (<5mm)