NET is a very complicated puzzle.

I figured that out within days of Jane’s diagnosis based just on how hard it was to figure out she had it.

But every few days since I have found a new wrinkle in the disease that makes it appear even more complicated–at least in terms of finding a cure and finding a way to get quick and accurate diagnoses

Since Steve Jobs’ death the Internet has been flooded with stories on pancreatic NET. Most are pretty repetitive–if you’ve read one news article you have read most of them.

But I read each one anyway because I never know when someone will say something that sparks something new. That is what happened Saturday morning. I was reading a piece on pNET when I came across a list of the different kinds of pNETS. There are seven different types of NET that form in the pancreas. Each produces a different hormone or peptide–and each results in a different set of symptoms.

The human body creates nearly 70 different hormones. An NET can create excess quantities of almost any of them. And each is going to create a different set of symptoms if there is an excess amount of it.

And the tumors can form just about anywhere. There are lung cancers that are carcinoid–that produce

hormones. There are carcinoid tumors that form in the breasts. There are carcinoid tumors…well, you get the idea.

How often is an NET in the lung written up as lung cancer instead of as an NET? How many more cases of NET would there be if all those were recorded as NETs instead of lung cancers? How many cases of carcinoid breast cancer are miss counted the same way?

How many cases of NET are we counting as something else? How frequent is this disease–really?

I have a sneaking suspicion we really don’t know.

There are potentially dozens of possible symptoms–any of which can look like something else that is more common is causing it. And the symptoms often come and go, making it look even more like it might be something else. Often, you don’t realize there is a big problem until it has spread into the liver.

And even if you do realize you are looking at an NET, you still have to find it.

I don’t say all this because the situation is hopeless. We have tools today we did not have even five years ago. We know far more today about the disease than we did even a year ago.

But finding a cure for a disease this complicated is likely not going to be easy–or cheap.

And $3 million a year–my most optimistic guess of what we spent last year–is not going to cut it.