Diethylstilbestrol (DES) Exposure
DES was the first synthetic estrogen and was given to pregnant women from 1938-1971 because it was believed to prevent miscarriages and promote "healthy pregnancies." It was found that not only did the drug not prevent problems associated with pregnancy, 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 offspring. Women who took DES have been found to have a "moderately" increased risk of developing breast cancer. Studies have found the increase in risk over women who did not take DES to be 30%.
Risk for women who took DES
Women who were given DES should have annual mammograms and breast exams by a healthcare provider. They should be familiar with their normal breast tissue and report any nipple discharge or changes in their breast tissue or skin (dimpling, swelling, redness, nipple retraction) to their healthcare provider. Women who were given DES during pregnancy should be sure their 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, which sounds frightening, this translates to 1 in every 1000 women exposed, or 0.1%, so it is still a rare occurrence. This risk is thought to be life-long, therefore women exposed to DES while in utero should be sure they follow annual screening guidelines for "DES daughters."
Screening includes an annual pap test with thorough exam of the vulva, vagina and cervix. Current screening recommendations for the general public say that women can have pap tests every 3 years, if their results are normal. This does not apply to DES daughters. This type of cervical cancer is not caused by HPV, therefore a negative HPV test does not mean that you can skip an annual exam.
DES daughters are also about twice as likely to develop breast cancer, compared to women not exposed to DES. Women should discuss this increased risk with their healthcare providers and make a screening plan. This plan will likely include annual mammograms, along with an annual breast exam by their healthcare provider. It may be helpful to perform monthly self-breast exams to become familiar with their breast tissue and report any changes to their healthcare provider.
Additional health concerns include infertility, miscarriage and "T" shaped uterus (an abnormally shaped uterus). Because babies were exposed in the 40s, 50s and 60s, they are just beginning to pass menopause in large numbers and researchers continue to follow many of these grown women to determine any additional health risks. In addition, it is too soon to know the risk for the grandchildren of women who took DES. Researchers continue to follow many of these children.