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A mesothelioma Survivor Story

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http://www.startribune.com/local/east/2 ... tkEP7DhUsr

A rare survival story in a brush with a rare and deadly cancer

By PAT PHEIFER, Star Tribune

August 26, 2008

Dying was not an option, Heather Von St. James says as her 3-year-old daughter, Lily, rushes in and out of the dining room, climbing on her lap, then dashing off again.

But dying was a terrifying possibility when doctors found a lump the size of an orange in Von St. James's left lung when Lily was only 3 months old. The diagnosis was mesothelioma -- a rare and often fatal form of lung cancer caused by exposure to asbestos.

Now, just over 2 1/2 years after undergoing radical surgery to remove her left lung, the lining around her heart, half of her diaphragm, her sixth rib and a few lymph nodes to be on the safe side, all traces of the cancer are gone.

"I claim cured," says Von St. James.

Dr. David Sugarbaker, who heads the International Mesothelioma Program at Brigham & Women's Hospital in Boston, said Von St. James is a shining example of the progress he is beginning to see in the fight against a disease that traditionally carried a maximum survival of 12 to 18 months.

"I am the poster child for hope after meso," the 39-year-old Roseville woman said.

Sugarbaker, who treated Von St. James, is only slightly more circumspect. "What I can say is that right now in this present moment she is disease-free," he said.

About 2,000 cases of mesothelioma are diagnosed in the United States each year, according to the National Cancer Institute. Unusually high rates of the disease have been reported among men from Minnesota's Iron Range since the late 1980s. The state Department of Health has so far identified 59 cases among mine workers and is planning a study with the University of Minnesota aimed at determining what might have caused the illness.

Sugarbaker said the disease has a 20- to 35-year latency period and traditionally has been diagnosed in people with direct exposure to asbestos, but doctors are seeing more patients with secondhand, nonoccupational exposure.

Von St. James believes her cancer was caused by childhood exposure to her father's asbestos-covered work clothes. Rollie Rosedahl, 66, of Spearfish, S.D., was a construction laborer for Ainsworth-Benning while Heather was growing up. Many of the products he worked with contained asbestos.

Von St. James said she was "a total daddy's girl" and often would shrug into her father's boots and coat to feed the rabbits they kept out back. "In that day and age it was just dust," she said. "We didn't know what it contained."

In December 2006, Von St. James sued Ainsworth-Benning and a dozen other companies, primarily manufacturers of the products that contained asbestos, in Ramsey County District Court. But last month, the Minnesota Court of Appeals ruled that she can't sue Ainsworth-Benning in Minnesota, saying the company doesn't have enough of a connection to the state.

Von St. James' attorney, Jessica Dean, said the suit was supposed to go to trial in September but was put on hold pending the Appeals Court ruling. Dean said she will ask the court to set a trial date, either for December or March.

'Is it cancer?'

The then-Heather Rosedahl moved to the Twin Cities in April 1998. Two months later she met Cameron Von St. James and it was "love at first sight." They married 10 months later and moved into his childhood home in Roseville to help his mother care for his ailing father. She managed an upscale salon in Minnetonka.

Just after Thanksgiving 2004, they learned she was pregnant. Von St. James gained only 5 pounds, but said her doctor wasn't concerned because "I'd always been a little on the larger side," she said. She noticed more pressure under her left breast and was short of breath but figured that was normal. Lily Rose Von St. James was born by C-section on Aug. 4, 2005.

Although Von St. James was exhausted when she returned to work part-time in August, she chalked it up to being a new mom. By October, when she returned full-time, she felt "like a truck was parked on my chest," she said.

Her shortness of breath worried her doctor. He ordered blood work, then a chest X-ray that showed fluid around her left lung.

"I said, 'Is it cancer?'" Von St. James recalled. "He goes, no, no, no, it can't be cancer. He thought it was pneumonia or something."

But the doctor was concerned enough to send her that afternoon to United Hospital in St. Paul to have the fluid drained and a CT scan performed.

"They sit me in this cold little waiting room and he [the doctor] comes back in and says, 'They found a mass.'

The next day, she returned for a needle biopsy. Pathologists sent the sample to the Mayo Clinic. On Nov. 21, Von St. James and her husband found themselves in Dr. James Flink's office at United Hospital.

"What you have is a cancer called mesothelioma," she recalled the doctor saying. "My husband said, 'Oh that's bad. That's the asbestos cancer.'"

Flink gave her options: Do nothing and live maybe 15 months, try chemotherapy and radiation and probably live five years, or go see Dr. Sugarbaker in Boston.

"My husband without blinking says get us to Boston," she said.

Von St. James underwent surgery on Feb. 2, 2006, was in the hospital for 18 days and stayed in Boston for a month. When Von St. James left Boston, she moved in with her parents for two months. In May, she returned home and began chemotherapy -- every three weeks for 12 weeks.

This October will mark two years since the end of the treatments. Von St. James still goes to Boston every four months for a CT scan, but so far, the cancer has not returned.

"I'm going to be the first meso patient to live 50-plus years. I told my doctor he would retire before I did," she said. "And he's OK with that."

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Thanks for sharing this Christine. I don't get the Star and Trib, but we here in the Twin Cities know of Jody Page at the age of 26 when dx.d with Meso and is still a survivor after 6 years now. She lives in Mpls., not far from Heather in Roseville. I'll have to look into this and see if these two have ever met. Heather's story sounds just like Jody's story regarding the surgery etc., etc., WOW, I have to make sure the name wasn't Jody when I read this.

Dr. Flink was my mom's Plum Doc many moons ago, and he works with my Pulm Doc as well. Nice doctor and a good doctor as well.

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