Charlene Kaforey, 48, had been troubled by stomach problems for almost four years. She and her doctors tried a variety of things to determine the cause, settling on a tentative diagnosis of Crohn’s Disease. But none of the medications typically used to treat Crohn’s had any effect on Charlene’s condition.
Frustrated, in the fall of 2006 she tried a new medication for a two-week protocol, plus a gluten-free diet for six months, and finally experienced some relief. But then, six months later, the pain and discomfort returned.
Since she had been off Crohn’s medications during the experiment with her diet, doctors decided it would be a good time to try some new tests, and included a CT scan. In March 2007, tests showed nothing wrong with Charlene’s stomach, but something odd at the base of her left lung. The doctor conducting the scan didn’t think it was anything serious, but recommended that she follow up with her primary care physician anyway.
In May 2007, Charlene received a chest CT scan, which revealed three spots on her left lung. Doctors suspected lymphoma. A cardio-thoracic specialist followed up with a PET scan, which showed the same three spots. He recommended a “wait and see” approach, suggesting they could check the area again in three to six months.
“I didn’t want to wait,” Charlene said.
At her request, doctors did a lung biopsy in July, and she was told she has mesothelioma.
The actual number of tiny tumors inside her chest were “too numerous to count,” and obviously most of those had not shown up on her scans.
“I’d never heard of it,” she says. “There are a few commercials on TV, but other than hearing the word, I was not familiar with it. Most people I tell just look at me, and they’ve never heard of it either.”
The diagnosis was particularly surprising, since the average median age of onset of symptoms is 70, according to most studies, and mesothelioma usually affects men more frequently than women. Charlene said she was exposed to asbestos when she was a child, but she cannot discuss the details because she is currently pursuing legal action.
“When you think of the numbers of people that have been exposed to asbestos in their lives, you wonder why there are few people that get [mesothelioma], as compared to other types of cancer. It’s still pretty rare,” Charlene said.
In the U.S. current statistics show between 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year. However, 10,000 Americans die each year from all asbestos-related diseases, according to statistics compiled by the Environmental Working Group. And, mesothelioma was not tracked as a specific cause of death by federal health officials until 1999, EWG points out, so actual totals for mesothelioma may be much higher.
“There is a possibility that my brother and my parents could be at risk of mesothelioma, because they would have been exposed at the same time as me,” Charlene worries. “You just don’t know what causes you to get it, and not someone else.”
As she continued to research her new diagnosis, Charlene was disheartened to find that the outlook for most mesothelioma patients is bleak. The Center for Mesothelioma and Asbestos-Related Diseases at the University of Maryland Medical Center estimates median survival time between 4-12 months after discovery.
Next: Charlene begins her fight.