Anne Leavitt is healthy. She keeps busy running a household, rearing three children, working part time as a pediatrician at the University of Washington. She volunteers, reads, gardens.
What she doesn’t do is dwell on DES, the synthetic estrogen her well-intentioned mother took while pregnant with her. Mom was older 42 and had a prior miscarriage, so the drug was prescribed to prevent another one.
But exposure to the hormone triggered a rare vaginal and cervical cancer in Leavitt four decades later. Within a week of the diagnosis, she underwent a radical hysterectomy.
“It was stunning,” she says. “I don’t know what other word to use.”
The cancer strikes one in a thousand daughters exposed in the womb, but usually in her late teens or early 20s.
Now, eight years later, Leavitt isn’t consumed by the consequences of DES.
Questions, though, still linger of what long-term, unidentified effects may be in store for the estimated 5 million to 10 million people exposed.
“We don’t know if there will be another peak,” says Leavitt, a petite woman with thin-framed glasses and short, gray-flecked brown hair.
Doctors prescribed DES, or diethylstilbestrol, to pregnant American women from 1938 to 1971. They thought it would prevent miscarriages or premature deliveries. It didn’t.
“It was the era of the miracle drugs like penicillin and other antibiotics,” says Pat Cody, co-founder and program director of the advocacy group DES Action USA. “Everybody wanted to believe; I wanted to believe. I thought it was wonderful. Isn’t science great?”
Instead, women who took DES have a 30 percent higher risk of breast cancer. Their daughters are 40 times more likely to develop clear cell adenocarcinoma, the cancer that Leavitt survived. There’s also an increased risk of complicated pregnancies, infertility and irregularly shaped reproductive tracts. Their sons are more likely to have non-cancerous growths on the testicles and other genital abnormalities.
Problems linked to DES aren’t new. What’s growing, though, is the sense of the unknown.
Is the population exposed in the womb more vulnerable to additional health troubles such as chronic or autoimmune diseases and other cancers? Are DES daughters especially sensitive to hormone replacement therapy?
Will the third generation suffer any consequences? There have been some indications so far, such as elderly lab mice whose mothers were exposed in utero showing an increased likelihood of uterine cancers and tumors.
The Centers for Disease Control and Prevention, responding to a congressional mandate, recently launched an educational campaign aimed at alerting the public and physicians to DES-related health risks. Still, even it says there are no definitive answers.
“The issue with DES is that the story’s not over,” says Marsha Vanderford, deputy director of communications for the CDC’s National Center for Environmental Health.
That’s not good news for the second generation, whose average age is 48 Leavitt’s age.
Around the time they were born, a study published in the American Journal of Obstetrics and Gynecology in 1953 found DES ineffective in preventing miscarriages and premature deliveries.
But the news wasn’t enough to dissuade doctors from prescribing it. DES has been called both “snake oil” and “wonder drug,” dispensed for multiple reasons, including as a morning-after pill and to stop lactation after pregnancy.
It was even given to livestock as a growth supplement, exposing countless people. The Food and Drug Administration eventually banned usage, though as recently as 1999 U.S. meat imported to Switzerland showed traces of the hormone.
It was a “huge global health disaster,” says Margaret Braun, a DES daughter and cancer survivor from New York who has written a book detailing the experiences of exposed people in their own words.
Braun spoke last month at the UW Women’s Center, inspiring her audience to open up to each other. “People don’t have reason to talk about their DES exposure unless it’s brought up,” Braun says.
The reasons vary. There’s a shame that some mothers feel, even though they took DES with the best of intentions. The problems are mostly unseen and deal with very private parts of the body. It was an embarrassment to the medical community.
DES did receive a flurry of attention after a 1971 study in the New England Journal of Medicine tied it to a rare vaginal and cervical cancer in young DES daughters. The FDA responded with a bulletin warning physicians of the potentially harmful effects of prescribing DES to pregnant women. Studies followed, support groups formed, lawsuits were filed against the pharmaceutical companies.
Skip forward to a new century, and that urgency is lacking.
Dr. Robert Hoover, director of epidemiology and biostatistics at the National Cancer Institute, occasionally lectures medical students about DES. In the late 1970s, awareness was high. Now, he says, maybe two people usually middle-aged in a class of 50 or 60 know about DES.
“It sort of, I guess, became old news.”
But it shouldn’t be, Hoover and others argue.
Leavitt was a Harvard student when she learned of her DES exposure. She’d graduated from high school in 1972 and traded her Cleveland upbringing for Cambridge. In college, she lived across the hall from the man she would eventually marry.
Her mother called one day after reading about DES, realizing she’d taken it with Anne, her third daughter.
Leavitt responded by undergoing thorough pelvic exams twice a year and learning all she could about the drug.
Because there were indications her children might be premature, she included bed rest with all her pregnancies. Leavitt delivered three healthy, full-term babies now 12, 16 and 19 years old.
She never agonized over the risk of cancer. “I didn’t worry about it,” she says. “I just knew how unlikely it was.”
In 1995, a biopsy revealed the disease. Within a week, she had a hysterectomy. Leavitt felt blessed to already have given birth to three children, but the surgery left no room for the possibility of more.
‘Why are they asking that?’
She faced problems conceiving, experienced serious complications during her pregnancy at six months her doctor had to sew up her shortening cervix and delivered a premature baby.
Harry, now 13, came two months early and stayed in the hospital for several weeks. Powers and her husband weren’t able to have another child, despite “four to five years of increasingly invasive procedures.”
She can’t pin her problems directly on DES “a court of law would say no” but in her heart she feels differently.
“If there were a handful of DES daughters in the country and things happened to a couple of them, you probably couldn’t make too many generalizations. But given it’s similar things that have happened over and over, that would give me the idea that it was related,” she says.
Anecdotal evidence illustrating the effects of DES abounds, but concrete scientific findings are scarce. Researchers are tracking the exposed population and experimenting on mice to examine problems that include breast cancer in women, testicular cancer in men and possible interaction with hormone replacement therapy. They’re also monitoring things such as heart disease and diabetes, which so far have shown no connection to the hormone, and assembling a cohort of DES granddaughters.
Every few years, the National Cancer Institute mails a survey to Powers’ Seattle home inquiring about her health.
When it comes, she and her younger sister, also involved in the study, start a conversation with: “Why are they asking that?”
Questions about autoimmune problems, for example, fuel their curiosity. There’s no clear evidence yet of its relationship to the drug.
And that’s a source of frustration, the lack of information available. “It takes forever for them to figure out anything,” says Powers, 49.
Powers and Leavitt don’t speak about DES with bitterness; they speak to boost awareness.
Leavitt even traveled to Atlanta twice as a representative of DES Cancer Network, a support group for survivors, to help the CDC shape its campaign.
Despite their problems, both women were lucky.
Leavitt’s mom knew she had taken DES, at the time marketed by numerous companies under multiple names, and sometimes as vitamins. In Powers’ case, her mother’s physician urged his patient to have her children examined. Her complete medical records led to her two younger daughters’ participation in a DES study.
But not all doctors were honest. Fearing lawsuits, some even refused to release medical records, destroying them instead. They left a large population that still knows nothing of its exposure.
Finding documents now through aging or deceased physicians and pharmacists is unlikely. After her surgery and out of curiosity for specifics, Leavitt tried to locate her mother’s obstetrician, who had died long ago, and the pharmacy, which had gone out of business.
Though she isn’t worried about her own daughter, Leavitt stresses the importance of following the exposed population and staying informed. She calls herself “living proof” of two things: that middle-aged DES daughters can still develop the cancer and that it’s treatable.
“My life was saved by knowledge.”