Is it IBS? Or is it NET cancer?
Irritable bowel syndrome is a common diagnosis for people who are experiencing pain and bloating in the stomach and intestines. It is often caused by eating particular foods or by stress. Avoiding those foods or reducing stress often eliminates the symptoms of IBS.
But there is another disease with almost identical symptoms that sometimes seems to respond to those same treatments: neuroendocrine tumor cancer — NET for short. And unlike IBS, it can progress into something deadly: carcinoid syndrome.
Symptoms:
If you have had:
▪ severe bloating of the stomach or intestines
▪ diarrhea that lasts more than a few days or that recurs frequently
▪ sudden, unexplained weight loss
▪ loss of appetite
▪ frequent insomnia
▪ frequent flushing or hot flashes (a sudden, brief reddening of the body that feels warm)
▪ frequent wheezing
▪ low blood pressure
▪ sudden onset of high blood pressure
▪ redness or swelling of the tongue or mouth
You may have NET.
What is NET?
NET is a relatively rare form of cancer that often starts in the small intestine, appendix or pancreas. It has also been found in many other places in the body. Truthfully, the tumors can form just about anywhere.
But unlike a normal cancer that can grow very rapidly, NET typically grows very slowly, at about the same rate as the cells in the rest of your body. This slow growth rate may be one of the reasons traditional forms of chemo and radiation therapies don’t work very well on this disease.
Also, unlike most normal tumors, NET tumors take an active role in the body’s chemistry. A neuroendocrine tumor can produce nearly any hormone or peptide the organs in the body can produce. The hormone most often produced is serotonin, but it can also produce adrenaline, insulin or any of a wide variety of peptides or other hormones.
And those extra hormones can produce any of a number of medical problems, ranging from insomnia to heart disease and eventual heart failure.
What should you do?
If you think you have IBS, and/or two or more of the symptoms above, a blood test for chromogranin A, a 24-hour 5-HIAA urine test, and a CT scan may be able to uncover the disease at an early stage. In many cases, if caught at an early stage, surgery can solve the problem before it spreads and does serious damage to other organs. But the tests are not foolproof. There is currently no way to detect this cancer early with certainty.
A new test, called a neurokinin A, may soon be available to help detect NETs. Currently only one lab in the United States does this test, and they are not licensed in all states.
Still, for this cancer, early detection and treatment is really the only cure.
This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.
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