By Melissa Fletcher Stoeltje,
Express-News Staff Writer

And I thought I was out of the woods.

Since my early teens, when my mother informed me she had taken the synthetic estrogen diethylstilbestrol, or DES, when she was pregnant with me, the specter of the drug has followed me.

DES is a hormone that doctors prescribed to millions of women from the 1940s to the '60s under the mistaken assumption that it helped prevent miscarriage. When my mother started bleeding when she was carrying me, her obstetrician gave her a bottle of DES.

What the drug actually did was increase the risk of a rare form of vaginal cancer in the daughters of the women who consumed it. But it did more than that. More commonly, it created deformities in the reproductive tracts of the daughters — weak or hooded cervixes, T-shaped uteruses — that made it difficult to conceive and bear children.

All through my 20s, my Pap smears came back suspicious. My doctor kept a close watch on me, and my funky cells never, thankfully, turned into cancer. In my 30s, I conceived my son and was able to carry him to term — thanks to a small stitch my doctor sewed into my weak cervix to keep it shut and a drug I took (oh, the irony) to relax my uterus so I wouldn't go into pre-term labor.

Still, the DES curse haunted me. Trying to conceive again, I miscarried. I became pregnant again but soon had to have emergency surgery to remove the fetus, which was growing in my fallopian tube, called an ectopic pregnancy. Attempts to become pregnant after that failed, and I gradually reconciled myself to having one perfect, miracle child.

All through my 30s and 40s — I'm now 48 — my Pap smears started turning up normal, not an unusual occurrence for some DES daughters. For the past decade or so I've breathed a huge sigh of relief.

But now the news comes out that DES daughters, as a group entering menopause, are at a heightened risk for breast cancer. This is worrying, say experts, because breast cancer is far more common than rare vaginal cancer.

"This is really unwelcome news, because so many women worldwide were prenatally exposed to DES, and these women are just now approaching the age at which breast cancer becomes more common," says Julie Palmer, an epidemiologist at Boston University who led the study.

She found that DES daughters over the age of 40 have 1.9 times the risk of developing breast cancer, compared to unexposed women of the same age.

"This puts a woman who has no other increased risk for cancer in the same category as a woman who has a mother or sister with breast cancer," says Palmer. "It's an increased risk, but not a hugely increased risk."

An estimated 1 million to 2 million U.S. women were exposed to DES in utero.

I heard the report about the new study as I sat in my car, listening to NPR. A familiar feeling washed over me, the same feeling I'd had as a teen when my mother explained to me that a drug she'd taken for all the right reasons might kill me.

The feeling was dread. Cold, unmitigated dread.

And anger, that those long-ago doctors blithely prescribed a potent drug without doing the appropriate testing, utterly convinced they were doing the right thing with not enough scientific evidence to bolster their assertion. I tell myself it was a different time back then, an era when doctors were gods and multimillion-dollar lawsuits had yet to transform the medical research landscape. Still, it doesn't help.

The fact that as far as DES daughters go I'm lucky — some can't have children at all — also offers spare comfort.

DES daughters around Texas greeted the new research with the jaundiced eye of those used to bad news.

"I wasn't surprised," says Kathy Lahey, 56, of Spring, who adopted her two children because her malformed uterus prevented conception. "DES affects so many other things, it's no surprise it causes breast cancer, too. It really does concern me, though, because we're the leading edge, we DES daughters. We don't know what to expect."

I called Palmer, the researcher, I guess for some sort of reassurance. My mind has an auto-default tendency to fly straight to worst-case scenarios. After hearing the report, I began feeling phantom pains in my breasts. I briefly wondered if prophylactic breast removal was the way to go.

Don't be silly, Palmer told me.

"That's only for women who are at 20 to 40 times the risk of developing breast cancer," she said. "And no one is suggesting that (DES daughters) have mammograms more than once a year. I have a mother and a sister with breast cancer, I'm 52, and I only have a mammogram once a year."

But DES daughters must be vigilant about having that one mammogram from age 40 on, she said, and they should do monthly breast self-exams. They should advocate for themselves with their caregivers, who may be dismissive of their concerns. They should watch their weight, limit their intake of alcohol and avoid high-fat diets, all risk factors. And they should think twice about using supplemental female hormones, such as those to relieve menopausal symptoms, which may also increase the risk.

"I'm quite concerned," says Karen Fernandes, 58, a DES daughter who is a nurse in Dallas. Fernandes lost her ovaries at 26 because of the drug. She has taken estrogen ever since. "I was already at higher risk (for taking the estrogen) and then you layer this on top of it."

Fernandes, who also had two ectopic pregnancies, worries that doctors today think the DES scare is over and aren't properly educated in the continuing dangers. Neither are medical students, she says.

But they need to be, because the tendrils of DES are far-reaching. Mothers who took the drug are also at increased risk for breast cancer. DES sons have been shown to have a higher risk for noncancerous testicular growths and genital malformations. Researchers worry that DES — which binds to DNA and alters cells forever — might even extend to DES grandchildren.

That would be my 18-year-old son.

Fernandes says her grown son — as with me, he's her one "miracle child" — is having trouble conceiving with his wife and she worries the lingering effects of DES might be to blame.

Meanwhile, Palmer said no one knows exactly why DES increases the rate of breast cancer. Animal studies show the same action that causes uterine defects might also play a role in harming breast tissue.

That's what scares me the most about the legacy of DES that has been bequeathed to me: The experts don't really know what to expect. As I near 50, my increased risk is 1.9 percent. But what happens at 60? Or 70? Will DES equate to an automatic death sentence?

Should I be living every moment as if a medical guillotine hangs over my head? Or should I just try to forget about DES, do the exams faithfully and go on with my life?

Like Fernandes, I try hard not to obsess about it all. Still, it burns.

"My mother was a victim, and I was surely an innocent victim," she says. "And here's the thing: The drug companies, which made huge profits on DES, have never once apologized."

mstoeltje@express-news.net

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