Oral Cancer News

Source: nytimes.com
Author: Walt Bogdanich

As Scott Jerome-Parks lay dying, he clung to this wish: that his fatal radiation overdose — which left him deaf, struggling to see, unable to swallow, burned, with his teeth falling out, with ulcers in his mouth and throat, nauseated, in severe pain and finally unable to breathe — be studied and talked about publicly so that others might not have to live his nightmare.

Sensing death was near, Jerome-Parks summoned his family for a final Christmas. His friends sent two buckets of sand from the beach where they had played as children so he could touch it, feel it and remember better days.

Jerome-Parks died several weeks later in 2007. He was 43.

A New York City hospital treating him for tongue cancer had failed to detect a computer error that directed a linear accelerator to blast his brain stem and neck with errant beams of radiation. Not once, but on three consecutive days.

Jerome-Parks experienced the wonders and the brutality of radiation. It helped diagnose and treat his disease. It also inflicted unspeakable pain.

Yet while Jerome-Parks had hoped that others might learn from his misfortune, the details of his case have until now been shielded from public view by the government, doctors and the hospital.

Americans today receive far more medical radiation than ever before. The average lifetime dose of diagnostic radiation has increased sevenfold since 1980, and more than half of all cancer patients receive radiation therapy. Without a doubt, radiation saves countless lives, and serious accidents are rare.

But patients often know little about the harm that can result when safety rules are violated and ever more powerful and technologically complex machines go awry. To better understand those risks, The New York Times examined thousands of pages of public and private records and interviewed physicians, medical physicists, researchers and government regulators. The Times found that while this new technology allows doctors to more accurately attack tumors and reduce certain mistakes, its complexity has created new avenues for error — through software flaws, faulty programming, poor safety procedures or inadequate staffing and training. When those errors occur, they can be crippling.

“Linear accelerators and treatment planning are enormously more complex than 20 years ago,” said Dr. Howard I. Amols, chief of clinical physics at Memorial Sloan-Kettering Cancer Center in New York. But hospitals, he said, are often too trusting of the new computer systems and software, relying on them as if they had been tested over time.

In June, The Times reported that a Philadelphia hospital gave the wrong radiation dose to more than 90 patients with prostate cancer — and then kept quiet about it. In 2005, a Florida hospital disclosed that 77 brain cancer patients had received 50 percent more radiation than prescribed because one of the most powerful — and supposedly precise — linear accelerators had been programmed incorrectly for nearly a year.

“My suspicion is that maybe half of the accidents we don’t know about,” said Dr. Fred A. Mettler Jr., who has written books on medical radiation.

Identifying radiation injuries can be difficult. Organ damage and radiation-induced cancer might not surface for years or decades, while underdosing is difficult to detect because there is no injury. While the worst accidents can be devastating, most radiation therapy “is very good,” Mettler said. “And while there are accidents, you wouldn’t want to scare people to death where they don’t get needed radiation therapy.”

In December 2004, New York state health officials issued a special alert, asking hospitals to be more vigilant when using radiation. As this warning circulated, Jerome-Parks was dealing with what he thought was a nagging sinus infection. He would not know until two months later that cancer had been growing at the base of his tongue. It was a surprising diagnosis for a relatively young man who rarely drank and did not smoke.

In time, his doctors and family came to suspect that his cancer was linked to the neighborhood where he had once worked, in the shadow of the World Trade Center. Several years before, he had taken a job there as a systems analyst at CIBC World Markets. His starting date: September 2001.

What Jerome-Parks most remembered about Sept. 11, his friends say, were bodies falling from the sky. He was particularly haunted by the memory of a man dressed in a suit and tie, plummeting to his death. In the days and weeks that followed, Jerome-Parks donated blood, helped a family search for a relative and volunteered at the Red Cross, driving search-and-rescue workers back and forth from what became known as “the pile.” Whether toxic dust caused his cancer may never be known, though his doctor would later say he believed there was a link.

He approached his illness as any careful consumer would, evaluating the varied treatment options in a medical mecca like New York. Yet in the end, what led him to St. Vincent’s Hospital, the primary treatment center for Sept. 11 victims, was a recommendation from an acquaintance at his church, which had become an increasingly important part of his life.

The Church of St. Francis Xavier in Manhattan, known for its social advocacy, reflected how much Jerome-Parks had changed from his days in Gulfport, Miss., where he was raised in a conservative family, eventually moving to Toronto and then New York, where he met his Canadian-born wife, Carmen.

In turning to St. Vincent’s, Jerome-Parks selected a hospital that had been courting cancer patients as a way to solidify its shaky financial standing. Its cancer unit, managed by Aptium Oncology, a unit of one of the world’s leading pharmaceutical companies, AstraZeneca, was marketing a new linear accelerator as though it had Jerome-Parks specifically in mind. Its big selling point was “smart-beam technology.”

“When the CFO of a New York company was diagnosed with a cancerous tumor at the base of his tongue,” promotional material for the new accelerator stated, “he also learned that conventional radiation therapy could potentially cure him, but might also cause serious side effects.”

The solution, the ad said, was a linear accelerator with 120 computer-controlled metal leaves, called a multileaf collimator, which could more precisely shape and modulate the radiation beam. This treatment is called Intensity Modulated Radiation Therapy, or IMRT. The unit St. Vincent’s had was made by Varian Medical Systems.

Dr. Salvatore M. Caruana, then a head and neck surgeon at St. Vincent’s, gave Jerome-Parks another option: surgery. In the end, Jerome-Parks chose radiation, with chemotherapy.

The investigation into what happened to Jerome-Parks quickly turned to the Varian software that powered the linear accelerator. Government investigators ended up blaming both St. Vincent’s, for failing to catch the error, and Varian, for its flawed software.

Jerome-Parks appreciated the irony of his situation: that someone who earned a living solving computer problems would be struck down by one.

Carmen Jerome-Parks, who was providing her husband round-the-clock care, refused to surrender.

“Prayer is stronger than radiation,” she wrote in the subject line of an e-mail to friends. Prayer groups were formed, and Mass was celebrated in his hospital room on their wedding anniversary. Linda Giuliano, one of the couple’s friends, believed that Jerome-Parks knew prayer would not be enough.

“At some point, he had to turn the corner, and he knew he wasn’t going to make it,” Giuliano said. “His hope was, ‘My death will not be for nothing.’ He didn’t say it that way, because that would take too much ego, and Scott didn’t have that kind of ego, but I think it would be really important to him to know that he didn’t die for nothing.”

Friends say the couple sought and received assurances that his story would be told.

Jerome-Parks’ parents were in Gulfport in February 2007, waiting for their house to be rebuilt after it was destroyed by Hurricane Katrina, when they got the news that their son had died.

In July, Jerome-Parks’ father stood across from the beach in Gulfport where his son’s friends had scooped up the sand they sent for his final Christmas.

“He taught us how to die,” Parks said. “He did it gracefully and thoughtfully and took care of everything. Most of us would lose it. He didn’t. He just did everything that he had to do, and then he let himself die.”

Parks said he had thought about starting a campaign to make medical mistakes public — but he never did. Nothing would ever come of it, he concluded.