Searching for the real NET number

An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.
An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.

#30NETfactsin30days: November 1

The number of new diagnoses of NET cancer in the US is rising faster than other cancers: an over 6-fold increase from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). 

What’s the right number?

Few things about this project have been more frustrating than trying to figure out how many new NET cancer patients are diagnosed each year. The last “official” figures come from a 2012 study that found 12,000 new patients and a total of 171,321 diagnosed patients living with the disease.

…we all need to be more aware…

That same study cited an expected growth in diagnoses of five percent a year. For cancer, that’s a fairly high growth rate in diagnoses. Lung cancer cases, for example, are in decline. Most other cancers seem only to grow as fast as the increase in population. The number of breast cancer diagnoses a year, for example doesn’t vary much from year to year.

Complicating the potential number

At five percent growth in diagnoses a year, 2019 should end with about 16,900 new patients. That, of course, also assumes that awareness and diagnostic techniques are no better than they were in 2012. Since that year, we’ve seen two new PET scanning technologies begin to come on line–the Octreoscan and the Gallium-68 scan.

The last “official” figures come from a 2012 study…

We’ve also seen the development of a new 5-HIAA blood test that is lest cumbersome than the 24-hour urine test doctors used in 2012. That test has only begun being used very recently, so it’s likely not had much impact yet–but may well do so in future.

Why numbers matter

The patient population has also likely grown during that period as new treatments have become available–but that’s an issue for another day.

…it’s likely not had much impact yet…

The lack of up-to-date data would be less of a problem with a disease where the diagnoses don’t vary much from year to year. But we’re still trying to define the scope of the problem we face. More patients creates greater urgency for finding treatments–which means a greater need for research funding, as well as a greater need for oncologists with knowledge of how to treat this peculiar disease.

More importantly, it means we need primary care practices to have greater awareness of the disease than many do.

Meanwhile, in Kentucky

Globally, there is evidence that the number of cases is growing outside the US. But there is one piece of evidence that NET cancer diagnoses are growing at a greater than five percent a year rate in the US.

More patients creates greater urgency…

In an article published in Oncotarget in April, 2018, researchers looked at more recent data on NET cancer diagnoses for the state of Kentucky through 2015. They found an increase from 3.6 per 100,000 in 1996 to 10.3 per 100,000 in 2015.

A word of warning

Now Kentucky has a higher cancer incidence rate than most of the rest of the country across the board. And its NET cancer incidence in 2012 was 8.4 as compared to 6.98 per 100,000 for the US as a whole. But that’s a greater growth than five percent a year in that locality.

…10.3 per 100,000 in 2015

How big an issue NET cancer will become in the years ahead is an open question. Right now, we all need to be more aware of it–and of its potential.