The problem with carcinoid is even some of the best oncologists never see more than two or three cases a year. It's a slow-growing disease. Carcinoid syndrome can be mistaken for menopause, irritable bowel syndrome, bronchitis or other common health concerns, Warner said. Johnson said she has been checked for some of those conditions. When she finally researched carcinoid, she presented the information to her doctor, who didn't know much about it.
Eating aggravates the attacks.
Johnson, who has lost 60 pounds, often eats very little so she can feel well enough to go to work at the Black Hawk County Courthouse or spend time with her husband of 20 years and two teen-age children. One day last week, she ate only a handful of Ritz crackers and a snack-size container of applesauce. Masri said this is the usual treatment to lessen the syndrome's symptoms. Once a tumor is found, usually in the small intestine or along the gastrointestinal tract, doctors try to remove it. Chemotherapy is not very effective, Masri said.