VIP: A DES Daughter Fights Back

Breast Cancer, Featured Article, Women's Health
on February 22, 2013
Cancer survivor who was affected by DES.

Jackie White was in her early teens when her mom, Sandie, sat her down for an important talk—more serious than the one girls typically get at that age. She explained that Jackie was a “DES daughter”: When her mom was pregnant with Jackie, she’d taken a medication called diethylstilbestrol (DES) to prevent miscarriage. That day, she told Jackie evidence had surfaced that both the women who took DES as well as their daughters could be at much higher risk for gynecological cancers and fertility problems.

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“I remember trying to process it at the time,” Jackie says. “Does this mean I won’t be able to have babies? What should I do about birth control? Will I always have these horrible menstrual cramps?”

Sandie, a nurse, encouraged her to ask all those questions and to learn as much as she could about the kinds of health problems a DES daughter might expect. She even took her to see the doctor who’d prescribed the drug—who the family continued to see for years. As a result, from that early age, Jackie became incredibly proactive about her health.

“I never saw a doctor who I didn’t identify myself to as a ‘DES daughter,’ and kept up with DES research,” she says. “And I always did my Pap smears, mammograms and breast self-exams on schedule.”

Jackie is one of an estimated 2.5 million DES daughters in the U.S.  Anywhere from five to 10 million Americans total were exposed to the drug while it was prescribed from 1938-1971, including women who took it while pregnant and their children of both genders, says Fran Howell, executive director of DES Action. DES daughters have 40 times the risk of developing a rare gynecological cancer called clear cell adenocarcinoma than women not exposed to DES, according to the Centers for Disease Control, and they have more than twice the risk of abnormal cervical cells, early menopause and infertility. Research on breast cancer has been less conclusive, but a 2006 study published in the journal Cancer Epidemiology Biomarkers and Prevention found that DES daughters were nearly twice as likely to have breast cancer after age 40.

Those scary statistics were in Jackie’s mind when, in March 2010, at age 47, she found a lump in her right breast while doing a self-exam.  She was diagnosed with Stage 3 breast cancer, and underwent a double mastectomy that April. Her road to recovery included long courses of chemotherapy, radiation and several complications from reconstruction surgery. But nearly three years later, she’s on the mend, resuming work in Shohola, Pa., and her favorite hobbies with her husband and two sons—camping and riding Harleys.

“I have check-ups every three months and they’re watching a couple spots,” she says. “But I am wonderful—I have my hair back, and I’m starting to get my energy back.”

Now that she’s feeling like herself again, Jackie has become a passionate advocate for DES awareness and research. She filed a lawsuit along with other DES daughters against the drug manufacturers, and became heavily involved with DES Action, which she discovered while researching the connection between DES daughters and breast cancer after her diagnosis. This past fall, she was elected to the Board of Directors and strives to spread the word about DES through the group, other cancer organizations and social media. In fact, someone she works with at a commercialized insurance company saw a post on Jackie’s Facebook page and subsequently realized she, too, was a DES daughter. Both she and her mom have reached out to Jackie for more information.

“Even if it happens by chance, that’s the kind of thing that drives me,” Jackie says.

But one DES daughter who Jackie has approached with mixed success is her younger sister, who struggled with fertility problems for years. (By the time Jackie’s youngest sister was born, doctors had stopped prescribing DES.)

“My sister doesn’t like doctors— avoidance is her strategy,” says Jackie. “And I understand that, especially as we started to have some of the symptoms. You’re in this horrible place where you have to face what you’ve got.”

But Jackie continues to reach out, sending her sister literature about being a DES daughter, and is hopeful she’ll come around.

In the meantime, Jackie and Sandie, a cervical cancer survivor, have continued to have open, if difficult, conversations over the years about the effects of DES on their lives.

“When I first got cancer, she was like, ‘Oh my God, I did this to you,’” Jackie says. “But I was able to help her understand that in no way what happened to me or her was her fault. She was just doing what a medical professional told her to do, and she never could have anticipated this.”

“We protect our children—that’s what we do as a parent,” continues Jackie, who also encourages her two sons to participate in research on the third generation of DES exposure. “My mom is a phenomenal parent and role model.”