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.

SOURCE: myMeso › Living with Meso – Charlene’s story, Part 1

• At least 741 people have been killed by asbestos since 1979 in Alabama.

• 10,881 people have sought justice in Alabama.

• At least 75 shipments (3,624 tons) of vermiculite went from Libby, MT to 4 locations in Alabama between 1948 and 1993.

About the Map

The dots on this map represent individuals who have died from two signature asbestos diseases, mesothelioma and asbestosis, as confirmed by death certificate records. To protect the identity of the victims, the dots on the map have been randomly placed within the county where the death was recorded.

The map includes just a small portion of all asbestos-related mortality that occurred during the time period analyzed. It does not include a single lung cancer death caused by asbestos, although national estimates of lung cancer mortality from asbestos range from 5,000 to 10,000 per year during that time.

The data also grossly underestimate mesothelioma mortality, the signature asbestos-caused cancer. This is in part due to under-diagnosis of the disease, but in greater measure because mesothelioma was not tracked by the federal government as a cause of death until 1999. Prior to that, scientists estimated mesothelioma mortality by assuming cancers of certain sites (for example, the pleura) were mesothelioma. This resulted in dramatic underestimates of the true mortality rates. When the government began tracking mesothelioma as a cause of death, mortality more than doubled, from 935 in 1998, to 2343 in 1999.

The map also does not include asbestos mortality from gastrointestinal (GI) cancer. The link between asbestos and GI cancer is contested by industry and its insurance companies, but OSHA and the World Health Organization International Agency for Research on Cancer all have concluded that asbestos does cause some types of GI cancer (OSHA 1994, WHO 1989). The best national estimates are about 1,200 asbestos-caused gastrointestinal cancers per year.

If the data presented above are corrected to include lung and gastrointestinal cancer and more accurate estimates of mesothelioma incidence, nationwide, the total mortality from asbestos from 1979 through 2001 would be about 230,000 people.

For more information about Asbestos in Alabama, visit the EWG report online.

SOURCE: myMeso › Asbestos Disease in Alabama

Ten thousand Americans die each year – a rate approaching 30 deaths per day – from diseases caused by asbestos, according to a detailed analysis of government mortality records and epidemiological studies by the EWG Action Fund. Asbestos kills thousands more people than skin cancer each year, and nearly the number that are slain in assults with firearms, they found.

Another scary statistic shows that mesothelioma was not tracked as a cause of death by federal health officials until 1999. Prior to that time, the National Center for Health Statistics (NCHS) and National Institute for Occupational Safety and Health (NIOSH) tried to estimate the number of deaths due to malignant mesothelioma by using surrogate measures with tumors related to mesotheliomas.

The report states that scientists now know that estimates of mesothelioma based on surrogate indicators dramatically underestimated the number of deaths due to mesothelioma. The EWG Action Fund found the first year that federal officials began tracking mesothelioma as a distinct cause of death, official mortality more than doubled! In 1998, the last year surrogate indicators were used, the estimated number of mesothelioma deaths was 935. One year later, when malignant mesothelioma was specifically coded as a cause of death, the number of deaths was 2,343.

The EWG also estimates that we may not see the peak in U.S. asbestos disease for another 10 years or more.There was widespread use of asbestos in the United States by the mid-1970s. The EWG estimates that more than 3,000 consumer and industrial products on the market at that time contained asbestos; asbestos product factories were polluting nearby neighborhoods; asbestos workers were heavily exposed on the job and were bringing home substantial amounts of asbestos dust to their wives and children; and asbestos was commonly used in public buildings and workplaces for soundproofing, fireproofing, and insulation.

Awareness of the dangers of asbestos to health didn’t develop until the beginning of the 1980s, and safety measures weren’t implemented across the board even then. Asbestos is still not totally banned today. The EWG points out that it remains heavily used in brake shoes and other products, and millions of people are exposed at home or in their workplace by the monumental quantities of asbestos that remain in the built environment — the attic insulation in 30 million American homes, for instance — following decades of heavy use.Asbestos diseases have a 20 to 50 year latency period, meaning that a substantial portion of individuals exposed in the 1960s and 1970s are just now showing up as disease or mortality statistics.

The magnitude of this public health crisis raises profound questions about the wisdom and fairness of doing anything to cut off any avenue that might provide assistance or protection to the tens of thousands of Americans who become sick and die from asbestos exposure.For more information, visit http://www.reports.ewg.org or http://www.ewg.org.

SOURCE: myMeso › Asbestos: A Looming Crisis in Public Health