Dr. Arthur Herbst is scrubbing for surgery. His 19-year-old patient is being anesthetized, her slim body draped in a sterile sheet, her head wrapped, her eyes taped shut. She has come from St. Louis to Chicago to be operated on for cancer of the vagina, a tumor whose history goes back to the time when she was still a fetus. To prevent miscarriage, her mother had taken a drug called diethylstilbestrol, or DES.
It was Dr. Herbst, then at Harvard, who noted in 1971 that the young daughters of women who had taken DES were developing an abnormal number of vaginal and cervical cancers. Now, ironically, Herbst is chairman of obstetrics and chief of staff at the University of Chicago’s Lying-in Hospital, a renowned maternity center that is being sued by DES mothers given the drug experimentally in the 1950s.
Herbst, 48, has nonetheless continued to study the long-term damage DES may cause. He is also fighting the short-term battles, such as that of his St. Louis patient. He removed her tumor, then cut away surrounding tissue in stages and sent it to the lab for biopsy. Two hours after the operation began, he learned that the last samples were free of malignancy. While DES-caused tumors almost always require hysterectomies, it appeared that this young woman’s malignancy had not spread. Her uterus was spared and she may be able to bear children. “Thank you very much indeed,” Herbst said jubilantly to his surgical team. “We are going to stop.”
Vaginal and cervical cancers are normally diseases of middle age, but Herbst and his Harvard co-workers were finding them in girls as young as 14. The common factor was that their mothers had taken the synthetic estrogen first developed in 1938 and approved by the FDA in 1947. DES compensated for hormone deficiencies in pregnant women and thus was believed to prevent miscarriage. By the early 70s, it was generally acknowledged to be ineffective.
By then, Herbst guesses, two million American women may have taken DES; others put the figure as high as six million. According to Herbst, the risk of a DES-exposed woman under 24 suffering vaginal or cervical cancer is only one in 1,000, or less. But he adds, “If you are the one that has gotten the cancer, that number is meaningless.” He estimates 200 cases have been diagnosed in the U.S. so far.
A condition known as adenosis, a benign lesion that sometimes precedes cancer, occurs in 50 percent of DES daughters. Furthermore, a recent study at Baylor College of Medicine indicated that two-thirds of these young women show abnormalities of the uterus that may complicate their own pregnancies. Unusually high rates of premature births among DES daughters and infertility in the sons of DES mothers may be other side effects.
In addition, while most of the daughters’ cancers appear in their teens, nobody knows what effects may surface later. Herbst says: “We are looking at the front end of the iceberg. Most of these young ladies are 20 or 25. We won’t have any answer to this question until they are 35 or 45.”
The University of Chicago has already been sued for $77.4 million by three women in behalf of 1,058 patients given DES in the 1950s. A suit against White Laboratories, Inc., one of the companies that made the drug, resulted in an $800,000 judgment in favor of a DES daughter. It is being appealed.
Herbst says he never asks a woman who comes to him for help if she plans to sue. “I’m going to take care of my patients,” he declares, “regardless of what they do.”
A native of Pittsburgh whose father was a wholesale clothing salesman, Herbst studied physics at Harvard because, he says drily, “I heard it was a good college.” After serving as communications officer on a destroyer in the Korean war, he decided on medicine and went back to Harvard. In Cambridge, he met wife Lee, a teacher now working on her Ph.D. in educational psychology at the University of Chicago.
Herbst’s experience with DES has not heightened his confidence in society’s ability to reduce drug-related illness. “We’re overly medicated,” he says, adding, “You can animal-test drugs until you are green in the face and it does not necessarily tell you what is going to happen in humans.” DES is still being used in some cases of menopause therapy and as a “morning after” anti-pregnancy pill.