NET is like china

As I was waking up this morning, it struck me that NET is like China.

I’ve been to China once. It wasn’t a long stay. A work trip of about a week, with factory visits in southern China and a few days of sightseeing in Shanghai on my way home. But really, I can’t say that I’ve been there. I’ve been to a few micro-fragments of China.

The only thing I truly understood while I was there was that I didn’t understand.

The country consists of so many historical layers. Parallel systems—state, regions, informal structures. With almost endless variations depending on where you look and who you talk to.

NET is like China.
Not because it is mysterious in any romantic sense, but because it is systemically complex, internally contradictory, and impossible to reduce to a single narrative.

Just as China is not one country, NET is not one disease.

It is:
– different primary tumors
– different hormonal profiles
– different growth rates
– different biological behaviors
– different patient bodies responding in entirely different ways

And just as with China, the same rule applies:
The more you know, the less inclined you are to say, “I’ve got this.”

There are “China experts” who understand:
– politics but not everyday life
– economics but not culture
– Shanghai but not Sichuan

And there are NET specialists who understand:
– imaging but not symptom burden
– tumor control but not the autonomic nervous system
– statistics but not lived disease

So when someone says,
“This is typical for NET,”
or
“This is how it usually looks,”

…it is often true within their map.
But the map is not the territory.

Living with NET is, in many ways, about being forced to accept that theory doesn’t quite match reality—
while reality itself remains entirely consistent.

We are constantly misunderstood.
Not because people are stupid,
but because they believe a complex system must be simplified.

But some things cannot be explained.
They can only be respected as complex.

I don’t know more about NET than I knew about China.
But I know what it is like to be in it.

And sometimes, that is the only knowledge that is truly true.