Anti-miscarriage drug's users battle guilt, anger DES causes cancer in their daughters

October 11, 1993|By Thomas W. Waldron | Thomas W. Waldron,Staff Writer

A photo caption in The Sun yesterday incorrectly identified two participants at a conference on the cancer-causing drug DES. Shown above are Yvonne Shewmaker and her daughter, LuEllen Blum, a victim of DES-caused cancer. They were misidentified as Minnie Ann Klone and her daughter, Kathy Coburn, shown below.

The Sun regrets the errors.

Minnie Ann Klone is working on it, but she still feels responsible for the death of her daughter.

Thirty-five years ago, Mrs. Klone took DES, thought then to be a wonder drug that would prevent miscarriage. She made it through the pregnancy and Tammy was born.

When she was 15, Tammy developed vaginal cancer caused by the drug her mother had taken. The cancer finally killed her in July, at the age of 34.

FOR THE RECORD - CORRECTION

"I feel really guilty," Mrs. Klone, 57, said yesterday. "I just feel like I took a beautiful girl and shortened her life and made it so she was unable to have children, or even get married."

Feelings such as that brought Mrs. Klone and about 40 other women from around the country to Baltimore over the weekend for a meeting of the DES Cancer Network, a national information, lobbying and support group.

The 10-year-old organization works to inform the public of the risks of diethylstilbestrol (DES), a synthetic version of the female hormone estrogen that was in widespread use between 1941 and 1971 and now is known to cause cancer.

Mothers who took the drug and daughters who suffered from it shared their experiences -- horrific stories laced with shame, guilt and anger.

There is the shame of young women whose sexual organs have been disfigured, the guilt of mothers who unknowingly poisoned their children, and anger at a system that let it happen.

"It affects the most private aspects of a person's life," said Margaret Lee Braun, executive director of the network and a DES-caused cancer survivor.

For 30 years, doctors routinely prescribed the drug for a variety of reasons -- to prevent miscarriages, treat gestational diabetes, or even produce fatter, healthier babies.

The drug caused more miscarriages than it prevented, however, and is responsible for cancer of the vagina or cervix in about 1 out of 1,000 daughters whose mothers used it. In men, the drug has been linked to sperm irregularities and possibly to testicular cancer.

As many as 10 million children are thought to have been exposed to DES in the womb before it was taken off the U.S. market.

Luellen Blum, 38, who has been fighting cancer for nearly nine years, came to the sessions at USF&G's Mount Washington Conference Center from Denver, joining her mother from San Diego. Mrs. Blum has had surgery and radiation treatment. She cannot have children and is fighting premature menopause.

But, she said, she has never been angry at her mother.

"She was given something by a doctor, who's supposed to know what the drug will do," Mrs. Blum said. "No one really questioned a doctor as they do now. The doctor was supposed to know all."

Her mother, Yvonne Shewmaker, now 68, took the drug after a miscarriage.

"I thought, how marvelous, this little pill might save this pregnancy," Mrs. Shewmaker said. "I never blamed the doctor. He stopped using it when he figured out on his own that it didn't work."

The two-day conference in Baltimore provided the women with information about what they say is an underpublicized health risk. There was art therapy, in which the women used crayons to portray how they felt about their bodies and their experiences. And there were tearful moments to share each other's stories.

For many of the women, it was a rare chance to be with others who have gone through DES-caused cancer.

Marsha Mainzer, 40, of Virginia Beach, Va., talked about the 31 operations and "thousands of shots of radiation" she has gone through since her cancer was diagnosed 22 years ago.

And Deborah Ress talked about her two divorces that were fueled by sexual problems brought on by vaginal cancer.

"Both marriages were seriously affected by the fact I can't have sex normally," said Ms. Ress, 40, of Oakland, Calif. "The main difficulty for me is not forming intimate relationships. But there are women here who have had success in their relationships, and that gives me hope."

Victims of DES helped persuade Congress to expand research into ailments caused by the drug and to launch a national education project.

While that is important, Ms. Braun's group is also pushing for more research into the psychological damage that Ms. Ress and many others have suffered.

"There's an enormous stigma around DES, a secrecy that denies healing," Ms. Braun said. "You're in a family and your 18- or 21-year-old daughter can't have children and it's because of a drug you took, then there is a stigma."

DIETHYLSTILBESTROL

Diethylstilbestrol, or DES, is a synthetic form of the female hormone estrogen that was given to millions of pregnant women in the United States between 1941 and 1971.

In daughters of women who took DES, the drug can cause cervical and vaginal cancer and less serious problems in the reproductive system.

In sons of DES users, the drug has been linked with sperm irregularities and possibly with testicular cancer.

The National Cancer Institute urges women whose mothers used the drug to receive regular examinations from a doctor familiar with DES-caused problems.

Women who took the drug and their sons should inform their doctors.

For more information, write the DES Cancer Network, P.O. Box 10185, Rochester, N.Y. 14610, or call 1-716-473-6119.

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