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Potential Health Risks for DES Daughters

		Related Concerns
		Overview Potential Health Risks for Women Prescribed DES While Pregnant Potential Health Risks for DES Daugthers Potential Health Risks for DES Sons Potential Health Risks for Third Generation (Offspring of DES Daughters and Sons)

Ongoing research has confirmed health risks for DES Daughters including increased incidence of clear cell adenocarcinoma (CCA), structural abnormalities in the reproductive organs, infertility, and pregnancy complications. (To read more about confirmed health risks, refer to Known DES Health Effects.) However, recent research findings raise additional concerns about health problems associated with DES exposure for women exposed before birth. Although research has not provided definitive answers for these questions, DES Daughters and their health care providers should be aware of these emerging issues and remain up-to-date on current research in these areas.

Early studies of this health risk suggested that CCA was primarily a risk for DES Daughters in their teens and 20s. More recent information from the CCA registry at the University of Chicago shows that DES Daughters in their 30s and 40s have been diagnosed with CCA (Hatch, 1998). No one knows how common CCA may be as the majority of DES Daughters enter their 50s and 60s. As a result, CCA is now considered a lifetime risk for DES Daughters.

Scientists are also investigating if DES Daughters have an increased risk of a condition called cervical intraepithelial neoplasia. Cervical intraepithelial neoplasia (CIN) is a general term for the growth of abnormal cells on the surface of the cervix. One recent study found that DES Daughters are twice as likely to experience CIN as unexposed women (Hatch, 2001). An earlier study found that DES Daughters are two to four times more likely than unexposed women to have abnormal cells changes on the cervix or to experience cervical carcinoma in situ (CIS). CIS involves only the cells in which the cancer begins, but does not spread to nearby tissues (Robboy, 1984). More recently, researchers analyzed experiences of women from the Netherlands DES Information Center. DES Daughters registered at the Information Center reported three times the incidence of cervical cancer as did unexposed women (Verloop, 2000).

Exposure to estrogen before birth has been linked to increased risk for breast cancer (Trichopoulous, 1990; Potischman, 1999). As a result, concerns have been raised about whether DES Daughters have an increased risk of breast cancer.

Until recently the majority of DES Daughters were too young to determine whether DES exposure increased their risk of breast cancer. However, a recent study provides initial results linking exposure to DES before birth with increased rates of breast cancer (Palmer, 2002). The study found that among study participants, DES Daughters were more likely to experience breast cancer than were unexposed women. DES Daughters had a relative risk of 1.4 (40% higher incidence of breast cancer). However, the finding was not statistically significant, which means that the increased rate of breast cancer could have been the result of chance. The study did find that, in study participants over 40, DES Daughters were two-and-a-half times more likely than unexposed women to be diagnosed with breast cancer. The results for women over 40 were statistically significant (not likely to be due to chance). DES Daughters under 40 years of age did not experience an increased risk of breast cancer. The findings from this study are considered preliminary until confirmed and refined by other research. However, DES Daughters and their health care providers should be aware of this research and follow breast cancer screening guidelines recommended by the American Cancer Society (ACS) or the National Cancer Institute (NCI). Guidelines for breast cancer screening can be found at the ACS Web site (www.cancer.org) or at the NCI Web site (www.cancer.gov).

Research on additional health concerns is ongoing because as DES Daughters experience menopause, a time during which certain conditions (such as osteoporosis, breast cancer, and cervical cancer) become more common in the population, continued monitoring is necessary. While research continues, you should protect your health by staying informed and talking with a health care provider about screenings for age-related cancers.

Some DES Daughters wonder whether they should use birth control pills. The decision about birth control methods is a very personal one. Women should talk with their health care providers about the best method for each woman based on medical conditions and health history. Research can also help women make informed medical decisions. Research has not found DES Daughters to be at risk for any cancers except clear cell cancer of the vagina and cervix (Hatch, 1998). The largest study of DES Daughters to date found that use of birth control pills by DES Daughters did not increase the risk for breast cancer or any other type of cancer (Hatch, 1998). The recently published Women's Contraceptive and Reproductive Experience Study found that use of birth control pills did not increase women's risk of breast cancer (Marchbanks, 2002). The study included more than 9,000 women, but did not include information about their DES exposure status.

Research on DES Daughters and HRT has been limited because many DES Daughters were born in the 1950s and 1960s and have yet to reach menopause — the time when replacing estrogen is typically considered. Studies are ongoing and researchers continue to evaluate any possible links between exposure to DES before birth (in the womb) and risks associated with HRT. The decision to take HRT is a personal one and should be made in consultation with your health care provider.

• CDC Information About Hormone Replacement Therapy Web site (www.cdc.gov/nccdphp/hrt.htm) or CDC's toll-free number (1-888-8 PUEBLO [1-888-878-3256]).
• DES Bibliography.

Although laboratory animal studies of mice exposed to DES before birth (in the womb) suggested an increased risk of autoimmune disease in female mice, studies among humans have reported mixed results. One study indicated that autoimmune diseases occurred more often in women exposed to DES before birth (in the womb), known as DES Daughters, than in the general population. However, no one autoimmune disease (such as rheumatoid arthritis or lupus) occurred more often than others (Noller, 1988). Researchers will continue to explore this issue.

No studies of humans have documented consistent findings linking DES exposure to any psychological condition or sexual dysfunction. However, some laboratory animal studies suggested links between exposure to estrogens before birth (in the womb) and cognitive abilities. For more information refer to the topic "Psychology" in the DES Bibliography.

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