Medical Mysteries

Common Symptoms Can Deceive

Jamie Fear had a form of abdominal cancer so uncommon many doctors see it only in a textbook.
Jamie Fear had a form of abdominal cancer so uncommon many doctors see it only in a textbook. (By Don Fear)
By Sandra G. Boodman
Washington Post Staff Writer
Tuesday, December 11, 2007

All her life, Jamie Fear's gut had been her proverbial Achilles' heel. When other people contracted colds or other respiratory infections, she got stomach viruses. She tried to baby her digestive system and learned to live with her sensitive stomach.

But when her symptoms increased in the mid-1990s and she noticed a persistently tender spot on the lower right side of her abdomen, Fear began a series of visits to her HMO. Each time, she recalled, doctors and nurses had the same answer: irritable bowel syndrome (IBS), a common, catchall diagnosis for digestive problems characterized by bouts of bloating, pain, constipation and diarrhea. There is no specific test for IBS, which is diagnosed on the basis of symptoms.

But as Fear later learned, her problem was anything but common -- and it wasn't IBS. She is convinced that her life might have been different had her repeated complaints that something was wrong been investigated more thoroughly; in fact, she recalled, her HMO did not refer her to a gastroenterologist.

"Back then I was the type of person, 'Okay, doctor, whatever you say,' " said Fear, 49, who lives in Woodbridge. "I didn't know how to demand things."

In November 1998, alarmed by worsening bloating, she called an advice nurse to see about getting a CA-125 test, a tumor marker used to screen for ovarian cancer; bloating and abdominal pain are common symptoms of the malignancy. The nurse, she said, pooh-poohed her request, saying, "Honey, you'd be in extreme pain if you had ovarian cancer." Fear didn't pursue it.

Although her problem was not ovarian cancer, Fear's CA-125 level turned out to be significantly elevated when it was tested later. Such a finding would have spurred doctors to look further and might have led to an earlier diagnosis.

Bloating so noticeable that her husband once asked Fear if she was pregnant was not her only symptom. Food went "right through me," Fear recalled, yet she had gained 20 pounds in the preceding year and was eating less. And sex had suddenly become painful.

Blood tests, X-rays, a pelvic exam and a barium enema revealed nothing; a CT scan or ultrasound, which would have detected the unusual problem, were not ordered.

"I felt like a hypochondriac searching for a disease," said Fear, then an editor at the National Academy of Sciences. "Nothing was ever wrong."

In March 1999, she went back to her primary care doctor and announced that her digestive problems "were affecting every aspect of my life." Maybe, she thought, that would get his attention.

By then her distended stomach was so tender that she felt a jolt of pain if her husband's arm grazed it while they were sleeping. The rim of her navel felt hard.

Fear recalled that her physician sat across the room scribbling on her chart and reading off a checklist of IBS symptoms, a problem he told her he had, too.

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