Today, April 1, is Asbestos Awareness Day. On a national level, the Asbestos Disease Awareness Organization (ADAO) is working in Washington, D.C., and around the world, to increase awareness and secure a true ban of all asbestos in the United States. Currently, asbestos is allowable in products at 1% or less by weight.

ADAO secured a senate resolution declaring April 1 as Asbestos Awareness Day, and April 1-7 as Abestos Awareness Week. You can visit the ADAO online.

Today also is Asbestos Awareness Day in Montgomery, Alabama, as designated by mayoral proclamation, signed by Montgomery Mayor Bobby Bright. The local effort strives to bring the message of asbestos awareness and education to the community and to bring attention to the national effort to ban asbestos.

Asbestos exposure can lead to asbestos-related disease including asbestosis, lung cancer and malignant mesothelioma. Many symptoms of mesothelioma and other asbestos diseases do not appear for 20 or more years, making it difficult to diagnose early. For this reason, the cancer is often diagnosed in late stages, making it too often deadly.

In the U.S. current statistics show 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year, and 10,000 Americans or more die each year from all asbestos-related disease.

Charlene’s Fight

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine

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.

• Mesothelioma – General Information
• Symptoms
• Diagnosis
• NEW Developments in Diagnosis
• Risk Factors
• Other Asbestos Related Cancer

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