How big is NET cancer?

Figuring out the scale of the NET cancer problem in the US is like trying to nail jello to a wall. It is a task I wish I could stop thinking about–that I wish I could convince myself does not matter. But given how many funding decisions get made on the basis of how widespread a disease is–or how widespread it is perceived to be–it is very much a thing that matters.

…it is our ignorance that is the problem.

I’ve written about this problem two or three times before. I’ve talked about NET cancer’s apparent relationship to right-side heart valve disease and irritable bowel syndrome. And I have talked about other studies that seem to indicate it is much more widespread than many believe.

Crohn’s patients more likely to have NET cancer

I’ve also written about the number of cases and deaths NET cancer causes each year in comparison to different, better-known forms of cancer. The funding discrepancies there are equally hard to fathom.

…it would appear NET cancer is not causing Crohn’s.

But yesterday I came across the abstract to a paper on Crohn’s Disease  that indicates that Crohn’s patients frequently have “carcinoid tumors”–another phrase for NET cancer–in their intestinal tract.

What is Crohn’s?

Crohn’s is another of those intestinal diseases often grouped together under Irritable Bowel Syndrome. And it is also fairly common for people who are eventually diagnosed with NET cancer to, at some point, be told they have Crohn’s instead.

…Crohn’s affects as many as 700,000 Americans.

According to the Crohn’s and Colitis Foundation of America, Crohn’s affects as many as 700,000 Americans. If many of them have carcinoid tumors, then this is another vein that may be disguising thousands of cases of NET cancer that are never officially recognized as such. Should we be testing every Crohn’s patient for NET cancer the same way I have  encouraged every IBS patient be tested for NET cancer?

Relationship between Crohn’s, NET cancer not clear

Since no one is clear as to the cause of Crohn’s, might at least some of the disease be being caused by those NETs in the Crohn’s patients’ intestines?

…Crohn’s patients frequently have “carcinoid tumors”…

A review paper written in 2007 based on 111 cases of Crohn’s found 3.6 percent had carcinoid tumors. But the paper also said those tumors were at a significant distance from the site of the Crohn’s Disease. The tumors were not creating carcinoid syndrome. Further, the researchers said, the carcinoid tumors “may be secondary to distant proinflammatory mediators, rather than a local inflammatory effect from adjacent Crohn’s disease.”

Is there a Crohn’s connection to NET cancer?

They did conclude, however, that people with Crohn’s were clearly more likely to develop “carcinoid tumors” than the rest of the population. Unfortunately, we understand so little about either disease we cannot be sure the carcinoid tumors if both diseases are being created by the same underlying issues.

Given, however, that only 3.6 percent of Crohn’s sufferers also had carcinoid tumors, it would appear NET cancer is not causing Crohn’s.

About 25,000 Crohn’s patients have NET cancer tumors

But if 3.6 percent of the 700,000 Crohn’s patients have NET cancer tumors in their bodies, that potentially increases the number of NET cancer patients by 25,200. That would be about 20 percent more patients than we currently have diagnosed and living with the disease.

…trying to nail jello to a wall.

Once again, it is our ignorance that is the problem. Only by doing basic research can we come to understand the problems and connections within the human body. That research requires money neither the federal government nor the private drug companies frequently are willing to supply. Filling that void is part of the reason I so often have my hat in my hand.