Serendipity is an amazing thing. You start out looking for something to print a quiz with and meet the woman you will marry. You apply for a job and drive by the house you will buy even though the job doesn’t work out. When you go looking for something, you never know what is going to turn up.
Serendipity comes in many forms. Last night I wanted some information about two drugs used in treating NET. I recognized one immediately but the other did not ring a bell. So I went looking. Eventually I found what I was looking for–but along the way I came across something else.
I happened upon an article from OncoLog at the University of Texas’ MD Anderson Cancer Center from March of 2009. In it a Dr. James Yao says NETs may be much more common than we think.
“(I)n two large autopsy series of more than 15,000 people each, carcinoid tumors were found in about 1% of the people,” Yao said in the article. He went on to say that in another study of autopsy results pancreatic NETs were found in one of every 1000 autopsies.
He also pointed out
a five-fold increase in NETs between 1973 and 2004. “If you look at prevalence within the realm of gastrointestinal neoplasms, neuroendocrine tumors are second only to colon cancer. They are actually more common than stomach cancer, pancreatic cancer, esophageal cancer, and hepatobiliary tumors,” Yao said.
I have not read the original studies he talks about. But given his background and where he works, I will accept what he says as true.
There are currently just over 312 million people living in the United States. If Yao’s figures are correct, there are three million cases of NET in this country.
We only know about roughly 120,000 of them. That’s less than five percent, if I am doing the math right.
Many of these tumors could be functionally inactive–meaning they do not produce hormones. And most NETs do grow very slowly. But if we are only uncovering five percent of all NETs I am not sure if it is statistically safe to draw any conclusions about what percentage of NETs are functionally active or inactive. We can know what happens in the cases we diagnose, but we have no way of knowing what is happening in the cases we cannot see.
Sometimes in recent weeks I have thought about NET as an iceberg. But an iceberg is two-thirds below the surface. With NET, 95 percent of the cases may be below the surface.
By contrast, there were about 290,000 cases of breast cancer diagnosed in the US last year. Imagine that we only diagnosed five percent of those–15,000 cases.
That’s where we may be with NET.
Scary thought.
