Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, March 22, 1990 TAG: 9003222099
SECTION: VIRGINIA PAGE: B1 EDITION: NEW RIVER VALLEY
SOURCE: Associated Press
DATELINE: RICHMOND LENGTH: Medium
Soviet doctors thought Olga Urakova had a tumor. But Dr. Harold M. Maurer, chairman of MCV's pediatrics department, diagnosed the disorder as a severe inflammation. Maurer is a widely recognized authority on the treatment of a rare malignant muscle tumor called rhabdomyosarcoma.
Until Maurer made the correct diagnosis, the child had been losing hair and suffering intestinal problems as a result of chemotherapy. Because the treatment did not appear to be working, other measures were being planned, including removal of part of her jaw, removal of some lymph nodes and possibly courses of radiation treatment.
Maurer led a study, sponsored by the National Cancer Institute and involving more than 90 medical centers, of the diagnosis and treatment of rhabdomyosarcoma. During the nearly 20-year duration of the study, survival rates for localized forms of the tumor in this country increased from 30 percent to slightly more than 80 percent.
Olga's story, according to the Soviet newspaper Komsomolskaya Pravda and interviews with some of those involved, began with the extraction of a tooth. A "tiny little bump" appeared on her gum that, according to the newspaper, "suddenly grew to an evil size."
A physician at the Soviet All Union Oncological Center, the paper said, diagnosed the growth as a rhabdomyosarcoma of the lower jaw, and "at the present level of our oncology, this is almost a death sentence." Chemotherapy threatments were started.
But Olga's father, Vladimir Urakov, an engineer, wondered if more could be done for his daughter. Using a network of radio hams - hobbyists who communicate with other hams around the world - word of Olga's plight was transmitted to American radio ham Eugene Walsh of Edison, N.J.
"It was after midnight" around mid-November, recalled Walsh's wife, Mary Ann, who is a nurse. "He asked me, what could I do?" she said Tuesday.
The next day, she said she made a couple of phone calls and learned of Maurer. She called his office and told Olga's story.
Maurer asked that Olga's records be sent by facsimile to him. The request was relayed back by Walsh through the Soviet radio hobbyists to Olga's father.
"Easy to say, `Telefax it,' " said Komsomolskaya Pravda. "For us, facsimile communications is still in the area of the exotic."
But a U.S. missile inspection team working fewer than 40 miles from Olga's city of Izhevsk had a fax machine, Olga's father and friends learned. The team sent Olga's records to Maurer.
He was not convinced, on the basis of those records, that Olga had rhabdomyosarcoma, Maurer said Tuesday. And the chemotherapy prescribed for her "was not really the best," he said.
"Rhabdomyosarcoma is not the easiest thing to diagnose, and not knowing the quality of their pathologists . . . and because the treatment would be so radical, I wanted to be sure," he said. He requested, via the radio ham grapevine, a tissue sample.
Again, the American missile inspection team helped out by arranging for the delivery of the sample to Maurer.
The analysis at MCV by Dr. Saul Kay, a pathologist, showed what Maurer had suspected - that Olga did not really have rhabdomyosarcoma.
The growth was caused by chronic inflammation, later confirmed by Soviet pathologists.
The treatment was essentially scraping inflamed tissue from the site of the tooth extraction.
That whole episode took place over a two-week period in late November.
Olga, whose hair is growing back and who's healthy once again, is learning English and writing notes to her, Walsh said.
Maurer, meanwhile, has since advised on treatment for a child with bone cancer in the Soviet Union, and he's received six to eight letters from patients there, he said.
"Who can say," said Komsomolskaya Pravda, "how many such `Olga,' `Tanya,' `Andy' are all over the Soviet Union who also had such little mistakes? Could every one of them find the road to the kind Dr. Maurer?"
by CNB