Diethylstilbestrol (DES) Exposure
Diethylstilbestrol (DES) was the first synthetic (manmade) estrogen. It was given to pregnant women from 1938-1971. It was thought to prevent miscarriages and promote "healthy pregnancies." Not only did the drug not prevent problems with pregnancy, but it also caused health issues for the women taking it, as well as children born of these pregnancies. These include both female and male children, though the cancer risks have only been proven in female children. Women who took DES have been found to have a "moderately" increased risk of developing breast cancer. Studies have found DES increased breast cancer risk by up to 30% compared to women who did not take DES.
What Can I Do If I Took DES?
If you were given DES, you should have yearly mammograms and breast exams by a healthcare provider. You should be familiar with your normal breast tissue and report any nipple discharge or changes in your breast tissue or skin (dimpling, swelling, redness, nipple retraction) to your healthcare provider. If you were given DES during pregnancy, you should be sure your children know this and report it to their healthcare team.
Risk for Daughters of Women who Took DES During Pregnancy
DES daughters, as they have become known, are at risk for developing a rare form of vaginal or cervical cancer called clear cell adenocarcinoma. Though the risk is 40 times that of someone not exposed to DES, this comes to only about 1 in every 1000 women or 0.1%. This risk is thought to be lifelong, so women exposed to DES while in utero (while in their mother's womb) should be sure they follow annual screening guidelines for "DES daughters."
Screening includes a yearly pap test with an exam of the vulva, vagina, and cervix. Screening recommendations for the general public are beginning to move to HPV testing alone and stopping Pap testing while screening. It is important to remember that this does not apply to DES daughters. The type of cervical cancer that happens after DES exposure is not caused by HPV, so a negative HPV test does not mean that you can skip an annual exam or not have a Pap test. Be sure your provider knows that you need a Pap test!
DES daughters are also about twice as likely to develop breast cancer, compared to women not exposed to DES. You should talk about this increased risk with your healthcare providers and make a screening plan. This plan will likely include annual mammograms, along with an annual breast exam by your healthcare provider. It may be helpful to perform monthly self-breast exams to become familiar with your breast tissue and report any changes to your healthcare provider.
Other health concerns include infertility, miscarriage, and "T" shaped uterus (an abnormally shaped uterus). Researchers continue to follow many of these grown women to see if there are any other health risks. It is too soon to know the risk for the grandchildren of women who took DES. Researchers continue to follow many of these children.
National Institutes of Health. Women exposed to DES in the womb face increased cancer risk.