Jadon White's Story

This news story highlights the frustrations of dealing with carcinoid and the need to be your own advocate by becoming your own carcinoid expert. The story appeared in The Dallas Morning News and is part of series about the healthcare system in Dallas.

Carcinoid tumors are extremely rare. Only about 5,000 are diagnosed each year, and those tend to be in women in their 50s or 60s. Young men get them so rarely that a Parkland doctor called Jadon "an unusual case among unusual cases." Why someone develops a carcinoid lung tumor is a mystery. Smoking and other environmental hazards have been ruled out as causes.

Further complicating this mystery, carcinoid tumors are not even considered cancer by most doctors, said Dr. Irvin M. Modlin, one of the country's top carcinoid experts. The tumors grow much more slowly than cancerous ones. Yet carcinoids can't be considered benign growths because they can spread from one organ to another, the textbook definition of cancer.

Dr. Modlin, a professor of surgery at Yale University's School of Medicine, has studied carcinoid tumors for 20 years and believes that many physicians don't understand the potential of these tumors to metastasize, or spread.