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A Killer's Stealthy Advance
A new generation of victims, afflicted with a rare cancer linked to asbestos, was exposed to the toxic fibers in the most innocent settings.
Excerpts from a Los Angeles Times article, May 9 2002
Victoria Pugh's first clue was a nosebleed. A few hours earlier, she had walked in cap and gown across the stage at Stillman College in Tuscaloosa, Ala., becoming the first member of her family to collect a college diploma.
Now, as she packed up to leave campus, her nose started to bleed uncontrollably. That summer, a mysterious malaise set in.
Eighteen months later, Pugh learned that she had mesothelioma, a rare, incurable form of cancer associated with asbestos. Pugh, 26, didn't even know what asbestos was, much less where she might have encountered it. Doctors told her she had three months to live.
"They couldn't operate," she said. "I just had to pray to God."
Pugh belongs to the third generation of mesothelioma victims. The first were miners who dug the mineral out of the earth and workers who sprayed heavy concentrations of asbestos insulation into ships, buildings and homes. The second group included retired construction workers, pipe fitters and others who worked with or near insulation and other asbestos products.
The third, which was largely unanticipated when asbestos emerged as a health crisis in the 1970s, is made up of younger people, some of whom are learning they have mesothelioma in their 50s, 40s, 30s and even 20s. In contrast to previous victims, many have no idea how they came in contact with asbestos and must go searching for answers.
Often they learn that they inhaled the toxic fibers in the most innocent and familiar of settings--on the lap of a father just home from a construction site, or in a laundry room where dusty overalls were washed. Others trace their illness to a long-forgotten summer job or a do-it-yourself home improvement project.
Mesothelioma is the most lethal legacy of the nation's embrace of asbestos, which peaked in 1973 when annual U.S. consumption reached 1 million tons. Prized as a cheap fire retardant and filler material, the "miracle fiber" was used in more than 3,500 products, from insulation to floor tiles. Although its use in the U.S. has declined steeply, the commercialization of asbestos has yet to loosen its grip on public health.
Because symptoms typically appear 15 to 40 years after the first exposure to asbestos, mesothelioma has been described as an epidemic in slow motion. Cases diagnosed today may reflect experiences from as long ago as the early 1960s.
An estimated 2,500 new cases are identified each year in the United States. Epidemiological evidence is scant, but National Cancer Institute surveys indicate that the incidence of mesothelioma doubled between 1977 and 1990 to 1.2 cases per 100,000 people and has remained near that level. But several specialists say they suspect the incidence is rising.
Explanations for the persistence of the disease vary. Some experts believe it is primarily a result of heavy occupational exposure from the 1960s through the early 1970s. Others believe that Americans are continuing to be exposed to asbestos released from aging building materials and from natural outcroppings of the mineral.
Most mesothelioma victims die within 18 months of diagnosis. Mortality is swift not because the cancer is fast-growing but because it usually is far advanced by the time it is detected.
It spreads like a thin sheet, rather than forming the lumps associated with other cancers. Its host is the mesothelium, the slick, thin membrane that lines the chest wall, abdominal cavity, lungs and other organs. Because of its stealthy advance, by the time a patient notices a shortness of breath, mesothelioma already may have encased a lung like a rind.
Until recently, mesothelioma was identified with aging industrial laborers. No longer.
"In 1988, the mean [patient age] was in the low to mid-70s, and it's steadily come down now to the mid-50s," said Dr. David Sugarbaker, chief of thoracic surgery at Boston's Brigham and Women's Hospital. "We've had a number of patients in their 30s and 40s, which we hadn't seen until the last few years."
Until 1994, almost all of Sugarbaker's patients knew where they had been exposed to asbestos, many of them in Boston-area shipyards. Of the patients he has seen in the last seven years, "30% do not know where they were exposed," he said.
A 16-year-old mesothelioma patient Sugarbaker saw a couple of years ago was exposed as an infant. Her mother recalled that when she did the laundry, she shook asbestos dust out of her husband's work clothes while her baby daughter slept nearby in a cradle.
Dr. Victor L. Roggli, a pathology professor at Duke University Medical Center in Durham, N.C., studied 1,445 mesothelioma victims from the last 25 years and found that 86% were exposed on the job. In 6% of the cases, the source of exposure was uncertain. In the remaining 8%, the victims inhaled fibers brought home on the clothing of someone with whom they lived.
"Whenever I see a case of mesothelioma in a person in his 30s or 40s," Roggli said, "the first thing I tell the doctors to ask is: 'What did Daddy do?'"
A Dream Blown Away
Under different circumstances, Victoria Pugh might have been in law school. Now, if she sees the inside of a courtroom, it will be as a plaintiff in a trial scheduled for this month against dozens of companies whose products she believes exposed her to asbestos.
By the time doctors at the University of Alabama hospital in Birmingham discovered Pugh's mesothelioma in November 2000, it had spread throughout her abdomen and wrapped around her heart.
Pugh's father, Sandy, who died of throat cancer in 1993 at 68, held a variety of jobs--laying pipes, painting air conditioner parts on an assembly line and fixing cars at a repair shop and at home. Victoria Pugh recalled "snooping around" the yard of her Greenville, Ala., home, watching her dad work on cars; she now believes she was exposed to asbestos in the dust blown off old brakes. In 1976, the year Victoria was born, her father began building the family home with scrap lumber he purchased from a congregation that had torn down an old church. For nearly two years, Sandy Pugh worked all day and spent his evenings and weekends building the house. So Bobbie Jean Pugh took her daughter to visit him at the construction site--where asbestos in joint compound presented another potential source of exposure.
Willie Pugh, who helped his brother, remembered spreading two coats of joint compound in every drywall seam in the house, letting each coat dry and sanding it smooth. The sanding kicked dust into the air "just like it was snowing," Willie Pugh said in a deposition.
"It would be all over us--in our head and in our mouth just like somebody put flour on you," he said. "Your clothes would be full of it."
When Victoria came, Sandy Pugh would put down his tools and take her in his lap. "She was all in that [dust] too," Willie Pugh said. "It's all in his face, and she was hugging him."
After college, Victoria returned home, where her mother and sister care for her. "She was going to school to be a lawyer--and, poof, her dream was blown away," Bobbie Jean Pugh said.
Victoria has lost 100 pounds since her diagnosis. The disease and a round of chemotherapy last year have left her weak, often too weak to bathe herself or to walk. She loses her balance easily and sometimes gets confused. She suffers sharp pains in her stomach and severe headaches. Sleep is difficult. Breathing is difficult. She takes powerful medications for the pain and antidepressants to "keep my mind."
Until recently, she managed to go to church every Sunday and Bible class every Wednesday nights.
"On my bad days," she said, "I don't move around too much."
'You Can't Go Easy'
When Klaus Brauch received his diagnosis in June, he and his wife, Susan, were dumbfounded.
"When they said 'mesothelioma' and 'Have you ever been around asbestos?' we said, 'Huh?'" recalled Brauch, 52.
Brauch was born in Germany and grew up in Toronto. He and Susan were high school sweethearts and married as undergraduates at the University of Toronto. After graduating, Brauch went to work for IBM as a systems engineer. The Brauchs were raising three daughters in Toronto when Klaus got an offer to join a Swedish software company as an executive in its Torrance-based U.S. unit. The family fell in love with the California coast and moved to Huntington Beach.
Searching his memory after the diagnosis, Brauch realized that he had been exposed to asbestos on two occasions. The first time was when, at 16, he spent the summer as a contractor's helper in Toronto, cleaning up construction sites where asbestos products were used.
"A summer job is a hell of a way to screw up a life," he said.
Eight years later, Brauch believes, he was exposed again, this time while making home improvements--nailing shingles on the roof, laying vinyl flooring, patching plaster and installing a fireplace in a basement recreation room.
The year was 1976, and although he didn't know it at the time, Brauch said, each phase of the renovation exposed him to products that contained asbestos.
"It was almost like you couldn't avoid it," he said. "It was in everything."
The exposures caught up with Brauch last summer, a few days after he and Susan celebrated their 30th wedding anniversary. Troubled by a shortness of breath, Brauch checked into a hospital for tests. The couple did not anticipate anything serious. The diagnosis was the first time they had heard the word "mesothelioma."
"He didn't seem that sick at all," Susan said. "We were totally blown away."
Susan searched the Internet. What little she found about the disease was overwhelmingly fatalistic.
"My sister had breast and uterine cancer, and she's still here," she said. "There's hope now with most cancers. With mesothelioma, some doctors will just tell you, 'Write your will.' That's the hard part. If it's untreatable, how do you have hope?"
However, Klaus considers himself lucky because his mesothelioma was discovered at an early stage, making him a prime candidate for experimental treatments, and he has thrown himself into the fight.
The Brauchs heard about a radical surgery Dr. Sugarbaker and his partners perform in Boston, and Klaus had a consultation within a month of his diagnosis. He was accepted for the surgery, and on Oct. 11, Brauch had what he calls his "amputation"--the removal of his right lung, his diaphragm and his sixth rib.
Brauch also was approved for a clinical trial. So before closing him up, surgeons took aim at any stray mesothelioma cells the scalpel might have missed by flushing his body for an hour with a high dose of an aggressive chemotherapy agent, a heated liquid that contains platinum. The therapy appears to have held the disease in check.
"You can't go easy with this cancer," Brauch said. "Did I think losing a lung was a swell idea? No. But anything that has a chance to save your life you will do."
'Nothing Can Be Done'
Research into mesothelioma is slow because it is an "orphan disease," receiving less funding than more prevalent cancers, said Dr. Harvey Pass, a professor of surgery and oncology at Wayne State University in Detroit.
The most pressing question for the small circle of doctors concerned with mesothelioma is why it strikes some people and not others. The answers, they believe, may lead to early-detection methods, better treatment or even a cure.
Among the most heavily exposed asbestos workers, such as insulation sprayers, mesothelioma is believed to strike less than 15%, said Dr. Robert B. Cameron, a thoracic surgeon at UCLA Medical Center.
"So why is it that the other 85% don't get mesothelioma? There may be some kind of genetic susceptibility, and that's what we're really curious about now," he said.
Cameron is setting up a registry in association with the Mesothelioma Applied Research Foundation in Santa Barbara that will cull case histories and tissue samples from across the country. It will log details about who is getting the disease, their course of treatment and its effectiveness.
"A few of us are trying to figure out what to do," he said. "Most patients die within a very short period of time, so most physicians don't even want to bother treating them. The average person is just told, 'There is nothing that can be done,' and they just go home and die."
That was the attitude Linda Seiler first encountered. The Mission Viejo woman was pursuing a professional singing and theater career two years ago when she was unable to shake a nagging cough and kept losing her breath. After she canceled a few singing lessons, her voice coach persuaded her to see a doctor. Her doctor sent her for a lung biopsy.
The surgeon discovered mesothelioma. He told Seiler she had maybe three months to live.
Seiler, who was 50, knew she had been exposed to asbestos as a child--every time her father, an insulation worker, came home from work and gave her a hug.
"He was dusty," she said in a videotaped deposition. "He had very black hair, so you [could] see the dust in his hair and on his neck, his clothes."
When Seiler was a child, the family lived in a trailer, moving as often as once a month to follow insulation jobs at refineries and other plants. The family settled in a house in Fontana when Seiler was in fifth grade.
That was the year the laundry became her chore. She sorted the family's clothes into piles--
shaking the dust out of the coveralls her father wore to work--before feeding them by hand through a washing machine ringer.
When Seiler and her husband, Jim, started looking for treatment options, one doctor recommended she have her lung removed.
Seiler could not bear to contemplate it. Singing was her life. Two months before her diagnosis, a talent agent had signed her and she was preparing to audition for musicals.
She chose another operation that would spare her lung--a 10-hour procedure in May 2000 in which the lining of her lung was scraped off and her diaphragm was replaced with tissue from a cow. The recovery was difficult and slow. It was four months before she could drive to the grocery. Then came five weeks of radiation treatments, five days a week.
Jim Seiler took a year off from work to care for his wife, and her mother helped as well. They went through the shock, denial and anger together.
Then came the bargaining: "It was: 'All right, God, if I eat right and do my treatments right and do everything the doctor tells me, I'll be all right,'" Jim said, recalling his wife's attitude. "We believed God would take care of us and make her well."
Linda Seiler appeared to becancer-free for several months. Then she noticed a lump on her back. On her next visit to the doctor in January 2001, eight months after the surgery, she learned that the cancer was back.
"I was devastated," she said in her deposition. "I was shocked. I really thought that I had beat it. I was so positive."
Seiler flew to a cancer research center in San Antonio for twice-monthly chemotherapy.
The cancer appeared to shrink--only to grow back. She got into a clinical trial at UCLA, where researchers were attacking cancer with immunotherapy. That also failed.
In late September, 18 months after her diagnosis, Seiler's oncologist told her she had run out of options.
In the car on the way home, Seiler looked at her husband and her mother and said, "I'll save a spot for you guys in heaven."
A few days later, on Oct. 2, she died.