Musings from a metastatic NET patient of 12 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!

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 10 years now!