NET cancer and the footnote problem
My NET cancer journey began with Jane’s diagnosis in August of 2010. But it did not end with her death from the disease barely four months later. For 29 months I’ve spent at least part of every day learning about the disease or trying to raise awareness of–or money for–it. And since my retirement from teaching those three quests have occupied 12-16 hours a day every day.
…the most frustrating thing I have tried to do…
I am fully invested in making NET cancer more than a footnote in the history of cancer. Actually, bringing it to the level of a footnote would be a major step forward. We still have a majority of primary care physicians who have never heard of NET cancer or carcinoid syndrome. And even those who have heard of it are often slow to do what few tests we have to detect it because they are convinced it is so rare none of their patients could possibly have it.
How many NET cancer cases?
It does not help when even major cancer publications get the numbers wrong. I read a piece yesterday that claimed we only diagnose about 2400 cases of NET cancer a year. The actual number, according to the National Cancer Institute, is almost five times that. And that is how many cases we manage to accurately diagnose every year. But the average NET cancer patient has been diagnosed incorrectly three times before they get the news that what they have is actually NET cancer.
…about 12,000 will die as a result of it in the coming year.
And how many people have NET cancer–and die of it–and don’t know they have it? That is a number we cannot even begin to guess at. But we can certainly infer that the number is significantly higher than the average doctor thinks it is–and certainly higher than the number of deaths attributed to it each year.
What we don’t know can kill us
Look into the number of cases of deaths by right-side heart valve failure very deeply and you discover that many of those patients had symptoms associated with NET cancer for years before their heart problem was diagnosed. No one is going to dig those bodies up and test them for it, so we will never know for sure–but where there is smoke there is generally fire.
…a number of cases that would dwarf that of most other forms of cancer.
An autopsy study done in 2010–which has since vanished–found NET cancer in one nearly one percent of the bodies it looked at. If those numbers were accurate, we could be looking at a number of cases that would dwarf that of most other forms of cancer.
Best case vs. worst case
The truth is we have no idea how big–or small–NET cancer actually is. At a minimum, we know there are 120,000 diagnosed cases walking around today–of whom about 12,000 will die as a result of it in the coming year. That’s more people than died last year in drunk driving crashes. We know that about 12,000 new cases of NET cancer will be diagnosed this year. Some of those people will live for years with the disease. Others will die within months of their diagnosis.
…the average NET cancer patient has been diagnosed incorrectly three times…
The worst case scenario, however, is terrifying. Under it there are three million people in the US who have NET cancer and do not know it. If ten percent of them die each year–as is the case with those who have been diagnosed–that is 300,000 deaths–almost double the number of deaths from lung cancer in 2012–and nearly eight times the number of deaths from breast cancer.
My NET cancer frustration
Advocacy groups like Mothers Against Drunk Driving raised nearly $50 million last year to fight drunk driving. Groups raising money for NET cancer raised less than a tenth of that. The total amount spent on NET cancer does not even amount to a rounding error when we compare it to breast cancer spending–yet we know for certain breast cancer kills only about three times as many Americans as the NET cancers we know about.
I am fully invested…
Fighting NET cancer is the most frustrating thing I have
tried to do in my life–but it is also, potentially, the most important.
