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Story appeared in the NEWS section
on page A01
SLIM CHANCE OF CURE BETTER THAN NONE
HEALTH: A FAMILY
BRAVES MEDICAL FRONTIERS TO SAVE A GIRL'S LIFE.
Tuesday, July 8, 1997
Vianna Trenchuk waits alone in a cavernous room. It is empty, except for the cold metal bed she lies on and the machine she hopes will save her life.
Four screws hold an awkward metal frame steady on her head: two in front above her eyes and two behind, where a scar curves like a question mark down the back of her head. Doctors hoped a surgery to remove Vianna's rare tumor three years ago would cure her, but in January, a walnut-sized growth glowed white against black on the 15-year-old's brain scans. The disease was back.
"She is out of options," said Dr. Michael Miller, radiation oncologist at Kaiser Permanente in Los Angeles. "That's a hard thing to accept."
When Kaiser doctors told the family this spring that there is no proven way to save or prolong Vianna's life, her parents, Dwayne and Sandra, launched an odyssey many with cancer brave: They decided to investigate the alternatives on their own.
The Trenchuks leaped onto the Internet, downloading dense, often incomprehensible medical studies from scientific journals, studying work done by doctors in Japan, the United States and Canada.
They went for a second, then a third, then fourth and fifth opinions, paying more than $1,000 to hear one contradictory story after another: Some recommended chemo, others radiation, some surgery. Still others said no, surgery was not possible, chemo was out, regular radiation had already failed.
"We talked to Sloan-Kettering, we talked to Duke," said Dwayne. "I had to search and search, month after month. It's a constant thing, day and night."
For their pains, here's what they found: "There's no consensus," said Dwayne.
"You see a lot of patients looking for help when doctors have told them there isn't much hope," said Dr. Stephen Feig, professor of pediatrics at the University of California, Los Angeles, chief of oncology at UCLA Children's Hospital and a member of UCLA's Jonsson Cancer Center.
For these patients struggling to pick a therapy from a handful of unproven options, no decisions are right or easy, he said.
"Where you get into problems are at the frontiers," he said.
"There's no standard established approach. A family has to say `Well, what are we going to do?' It's a problem. You weigh all the factors as best you can. There's no right or wrong that applies to everybody. This is a value judgment."
For weeks, the Trenchuks could find no right answer: Surgery or radiation on the hard-to-reach tumor could damage other parts of her brain, and high-dose chemotherapy could leave Vianna ill -- or kill her.
All the while "time is passing and the tumor is getting bigger," said Dwayne.
"You get a little desperate," Sandra said.
Then Dwayne heard a radio commercial touting Gamma Knife radiosurgery, a procedure his brother had mentioned. The Gamma Knife blasts tumors with 201 weak beams of radiation; at the spot where they all converge, the radiation is sometimes enough to shrink a tumor.
He saw an expert, then consulted with neurosurgeon and Gamma Knife expert Dr. Christopher M. Duma at Good Samaritan Hospital in Los Angeles.
There's a chance Gamma Knife radiation might shrink the tumor or stop its growth, he said, but because Vianna's tumor is rare, there are no studies that prove it will, Duma said.
Side effects are minimal and anecdotal experience is promising, he said.
And though that chance is slim, it's better than no chance at all, Dwayne and Sandra said.
While some cancer experts are critical of some of the radiosurgery centers that have cropped up around the country in the past decade -- saying they promise benefits based on anecdote and many don't publish studies of their success rates -- the Trenchuks felt they had no choice but to try it.
"There is really no other alternative for her," said Duma, 38.
"What you have is a tumor in an inoperable location. There is absolutely no question if this continues to grow it would be months or weeks before her speech or memory were effected. (Then) it would start to compress the brain stem and she would die."
"I'm looking for a chance," said Dwayne. "Miracles can happen. Who's to say?"
PRICE OF MIRACLES
"We could very easily treat her here (with radiosurgery) if I thought that was indicated," said Miller. But there is no proof the procedure will help the patient, he said.
The Trenchuks decided to try the therapy anyway and petitioned Kaiser for payment; a July 2 letter from Kaiser provided by Trenchuk shows the company denied the request because of a lack of evidence that the procedure will help, and the risk that it might hurt Vianna by destroying healthy brain tissue.
The decision not to cover it is "unethical," based on a desire to cut costs, said Dwayne. "If this is an option, why not give it a try?
"Why give up? We're only in the fifth inning and they're saying let's shut out the lights and go home. Well, we're still running around the bases."
For Vianna, it's simple: "All I know is something has to be done. Otherwise it's just going to keep getting large."
"I don't want to die," she said.
Miller at Kaiser said doing something is not always better than doing nothing because therapies can harm as well as help.
"I don't know why people are always so quick to judge that we're trying to save money. No one ever questions whether a person is making a recommendation (for treatment) for financial reasons," he said.
Given the lack of studies, "I don't know if you can be overly critical" of insurers' refusal to cover it, said Dr. Joann Ater, chief of the pediatric neural tumor section at the renowned M.D. Anderson Cancer Center in Houston.
"Since it's not a common thing to do, I can see how they might draw the line and say they will not pay for it."
Rather than wait for Kaiser to agree -- and for Vianna's tumor to grow still larger -- the Trenchuks dug into their savings to cover the $19,000 cost, and early on the morning of June 3, they brought their sunny girl to Good Sam.
Smiling and nervous, Vianna warns the anesthesiologist she will cry when he pokes her with his needles. She confesses a love for horseback riding, karate and body boarding, for the science labs at school, her vast collection of Barbies, her three cats, Sugar, Tiger and Spicy.
Then she is suddenly dazed and quiet, lolling under sedative. Her wig is off and you can see the angry scar, the patchy wiffs of thin hair.
She lies alone on her hard bed while doctors watch from the next room on video monitors _ safe from radiation behind cement walls and a thick steel door.
The bed slides up and into a dark chamber, a small, high-tech cave for one, and Duma asks through the microphone, "Vianna, are you okay?"
"Whatever," she giggles groggily.
A mournful Cirque du Soleil soundtrack fills the room -- Vianna's choice.
The procedure silently begins, bombarding the threat inside her head with 201 weak rays of radiation; doctors hope the blast will be powerful enough to shrink the tumor pressing against the speech and memory centers in her brain.
Dwayne Trenchuk marvels at the wonders of the technology that holds all his hope. "It's just like `Star Wars,' " he says.
Down the hall in the brightly lit cafeteria, Sandra picks at her food and tries to be upbeat.
"It's a relief," she said. "Something is being done. Before, nothing was being done."
The Trenchuks hope their decision was a good one that might buy Vianna a few extra months of healthy life. It's hard to know if it was, and if it will. Duma will run tests again in a few weeks to see if the tumor has grown.
"You're talking about a disease for which everyone is struggling to find an answer," said Feig. "If there was an easy answer, everybody would be doing it."