Living the NET cancer dream

In the best of all possible worlds, NET cancer would never killed my wife. We would have had a reliable test for the disease. We would have done the research that would have found a cure. We would have educated doctors to know what to look for, how to diagnose it, and how to treat it.

…people will keep dying of NET cancer…

In the best of all possible worlds, NET cancer funding would never have been a problem–research into even the rarest of cancers would not be a concern. We would not have been eliminated from the federal budget in 1968. It would not have taken until 2008 for us to get that funding back. Drug companies would be more interested in patient fates than in profits. Governments would be more concerned with helping find answers to every killer disease, not just the ones with the biggest constituencies.

NET cancer deaths create 12,000 broken families

In the best of all possible worlds I would have slept beside my wife last night and woke up in her arms this morning. Steve Jobs and Dave Thomas would still be alive–inventing the future or playing with their kids and grandkids. And anonymous patients would not be sitting in bathrooms preparing to give themselves another injection of a drug that will only ease their symptoms, not cure their disease.

We do not live in the best of all possible worlds.

But we do not live in the best of all possible worlds. NET cancer killed my wife. It killed Steve Jobs. It killed Dave Thomas. It killed 12,000 people last year and 12,000 more the year before, and 12,000 more the year before that. And it will kill 12,000 more this year and next year and the year after that. And all of those will be just the people who know they have it. God knows how many more have died–and will die–without knowing the real name of the thing that really killed them.

Hunting the NET cancer zebra

We do not live in the best of all possible worlds. We have no simple test to detect NET cancers. We have a complicated test that will catch one form of the disease–the one that produces excess serotonin–if a doctor thinks to order it. We have an expensive test that will detect some other forms some of the time–but only if a doctor orders it. We have a relatively new type of scan that can see NET cancer–if a doctor orders it. But we don’t look for zebras until everything else is ruled out.

It killed 12,000 people last year…

We do not live in the best of all possible worlds. Drug companies are not interested in drugs without major profit margins. Governments are cutting back on research funds–and make grants only when the outcome is fairly certain in any event. And even then, only if the constituency is big enough to deliver significant votes on election day. NET cancer has no big paydays for the drug companies–and no really vocal constituency.

12,000 empty beds

We do not live in the best of all possible worlds. Too many doctors have still never heard of NET cancer. And too many of those who have, think of it as too unlikely to test for–until it is too late.

In the best of all possible worlds…

So people will keep dying of NET cancer–12,000 who know they have it and uncounted thousands who will never find out. Widows and widowers will keep waking up to empty beds–and children and grandchildren will go on without a mother or a father, a grandmother or a grandfather–all because we don’t live in a perfect world.

Or even a really nice imperfect one.