DEAR DR. GOTT:
I would like to see you devote some space to a rare cancer called carcinoid cancer which is formed by neuroendocrine tumors. My husband was diagnosed with metastasizing carcinoid cancer in 2006.
The mascot for these patients is the zebra because the disease is often misdiagnosed as irritable bowel syndrome, Crohn’s disease, and other bowel ailments. Because of the difficulty in getting a proper diagnosis, the motto is “If you think it’s a horse, think again”.
My husband’s case is unusual because his primary tumor was located around the descending aorta, not the liver, as is typical. The cancer has since spread to his lungs and bones. He is a valiant warrior and tries to live a normal life in spite of the devastating side effects. As far as we know there is no cure. Treatment is usually surgery to reduce the tumors or a drug called Sandostatin. My husband was given Interferon but had to stop because Medicare refused to pay since it is not an approved carcinoid cancer treatment.
We are fortunate to have a support group for this disease only 30 miles away. It has been a lifeline for both us as. Your readers may be interested in more information which can be found online at www.carcinoid.org.
DEAR READER:
Carcinoid cancer is a relatively complex condition. It involves slow growing tumors that can present in nearly any part of the body. The most common sites are the small intestine, appendix, rectum, and more.
Some tumors may even produce hormones that can cause a condition known as Carcinoid Syndrome. The primary symptom is carcinoid crisis that may involve flushing of the face and upper body, diarrhea and asthma-like wheezing.
Early detection and removal of all the tumor tissue may lead to a complete and permanent cure. However, because the tumors are so slow-growing, the onset of symptoms can precede diagnosis by several years. Some tumors may not even be noticed until they have spread and multiplied to painful levels.
There are a few treatment options including surgery, chemotherapy and cancer-specific medication known as somatostatin analogues given by injection. Radiotherapy is used only for tumors that have spread within the skeletal system.
Nutritious high protein diets, vitamin and mineral supplements, anti-diarrheal drugs and more can be used in conjunction with the above treatments, primarily as a means to reduce the severity and frequency of diarrhea.
The Carcinoid Cancer Foundation website has several helpful links as well as information about specialists who are diagnosing and treating Carcinoid patients. I recommend anyone interested in learning more about this condition or who thinks their prior diagnoses (of IBS, Crohn’s, etc.) may be incorrect (because of failure to respond to appropriate treatment), to speak with their physician or gastroenterologist.
Because you mentioned that Carcinoid cancer is often misdiagnosed as benign bowel conditions such as IBS, I am sending you copies of my Health Reports “Constipation and Diarrhea” and “Irritable Bowel Syndrome”. Other readers who would like copies should send a self-addressed, stamped number 10 envelope and $2 per report to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title(s).
About Dr. Gott