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Musings from a metastatic NET patient of 14 years plus
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! I’ve had that a couple of times now. “no signs of progressive disease” was also mentioned so it’s there just not progressing. 
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.
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)“.
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.
For now, I’ll continue with my ‘ED’ label and crack on with life. After all, I’ve been stable with ‘ED’ for 14 years now!
p.s. I love to hear people being declared “NED“. That’s great but I am also happy with my EDBS!
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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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