DES exposure

Description
Diethylstilbestrol (DES) is a synthetic (manufactured) estrogen used to treat certain medical conditions. In the United States, DES was given to pregnant women from 1938 to the early 1970s to treat diabetes and prevent miscarriage, premature labor and preeclampsia (a serious condition that causes elevated blood pressure and protein in the urine).
In 1971, researchers found that daughters exposed to DES before birth had an increased risk of developing a rare form of cancer. In response to the findings, the U.S. Food and Drug Administration (FDA) issued a warning against the use of DES during pregnancy. From that time on, the use of DES in the United States dropped significantly, although it was used longer in other parts of the world. More recent studies indicate that DES taken during pregnancy may have adverse effects on the mother, as well as her sons and daughters. The National Cancer Institute continues to study these adverse effects.

In the United States, an estimated 10 million mothers and their children may have been exposed to DES during pregnancy. We'll focus on the known risks to affected mothers, daughters, sons and grandchildren.


DES mothers
Women who used DES during pregnancy may face a 30 percent higher risk of developing breast cancer. The risk appears to remain the same with age. If you took DES during pregnancy, the American College of Obstetricians and Gynecologists (ACOG) makes the following recommendations:
Although some authorities recommend monthly breast self-exams, other experts consider them optional because they're not as sensitive as clinical exams. If you do a monthly breast self-exam, consult your doctor if you notice anything unusual, including a lump in your breast or armpit, a newly inverted nipple, any nipple discharge, skin puckering or dimpling on a breast (creating an orange-peel appearance), swelling or thickening of a breast, unusual change in the size of a breast, breast pain or any other unusual breast changes.

Have regular mammograms. Although the debate on the timing of mammography continues, most health care professionals recommend regular mammograms every one to two years beginning at age 40 and annually beginning at age 50. The U.S. Preventive Services Task Force recommends mammograms every one to two years with or without clinical breast examination for women age 40 and older. Ultimately, the decision about when to begin mammography is between you and your doctor.

Consult your doctor for yearly breast and pelvic exams. The pelvic exam should include a Pap smear (taking a sample of cells from the cervix to screen for cervical cancer). This step is especially important because all possible consequences of using DES in pregnancy may not have been identified.

During menopause, discuss the risks and benefits of hormone replacement therapy (HRT) that includes estrogen with your doctor. To date, no studies have shown a risk associated with taking HRT after DES exposure.

Find out when, for how long, and in what quantity DES was taken during your pregnancy, and keep up-to-date on new research findings. Discuss DES exposure with your children, giving them as much information about their exposure as possible. Encourage them to learn about their risks and follow the appropriate recommendations.

DES daughters
DES exposure before birth has been associated with an increased risk of cervical cancer, structural changes in the reproductive organs, infertility and pregnancy problems.
Risks for DES daughters
DES daughters may have an increased risk of clear-cell adenocarcinoma (CCA, a rare form of vaginal or cervical cancer). The risk is about 1 in 1,000, compared to 1 in 40,000 unexposed women. CCA typically develops after age 14. Because the cancer has been found in DES daughters as late as their 40s, it's unknown if there's an upper age limit. CCA is now considered a lifelong risk for DES daughters.

DES taken during the first five months of pregnancy can cause structural changes in the reproductive organs of a female fetus. DES daughters may have abnormalities of the vagina, cervix, uterus or fallopian tubes. Some of these abnormalities are harmless, but others can increase the risk of cancer, infertility and pregnancy problems. Pregnancy problems may also occur without structural abnormalities.

DES daughters have a higher risk of developing adenosis (a structural change in which glandular tissue usually found in the canal between the cervix -- the neck of the uterus -- and uterus extends onto the cervix and possibly even the vaginal wall). The tissue produces a mucus that may be noticed as vaginal discharge.

DES daughters have an increased risk of infertility. Recent studies have shown that about 24 percent of DES daughters are unable to conceive, compared to 18 percent of unexposed women.

DES daughters who become pregnant have a higher risk of premature delivery and other pregnancy complications. During their first pregnancy, 64 percent deliver full-term babies, compared to 85 percent of unexposed women. Preterm labor occurs in about 20 percent of exposed women, compared to 8 percent of unexposed women. In addition, exposed women have a higher risk of miscarriage and ectopic pregnancy (when the fertilized egg implants itself outside the uterus).

Ongoing research indicates that DES daughters also may have an increased risk of other health problems, including abnormal Pap smears. Abnormal cells, which may be referred to as dysplasia, cervical intraepithelial neoplasia (CIN) or squamous intraepithelial lesions (SIL), may develop in the cervix or vagina. They are not cancerous, but can become cancerous if left untreated. DES daughters may also have a higher risk of breast cancer, especially after age 40. Further research is needed to confirm these findings.

Recommendations for DES daughters

Learn about the risks of DES exposure and keep up-to-date on the latest research findings.

Inform your doctor about your exposure to DES, including as many details as possible. Make sure he or she is well informed on the risks and special needs of women who were exposed to DES.

Although some authorities recommend monthly breast self-exams, other experts consider them optional because they're not as sensitive as clinical exams. If you do a monthly breast self-exam, consult your doctor if you notice anything unusual, including a lump in your breast or armpit, a newly inverted nipple, any nipple discharge, skin puckering or dimpling on a breast (creating an orange-peel appearance), swelling or thickening of a breast, unusual change in the size of a breast, breast pain or any other unusual breast changes.

See your doctor for yearly breast and pelvic exams. If you have extensive cervical adenosis, your doctor may recommend more frequent exams. The pelvic exam should include a physical exam of the reproductive organs; palpation of the uterus, fallopian tubes, ovaries and vagina; Pap smear that includes smears from the cervix and all four sides of the vagina; and iodine staining (applying iodine to the cervix and vagina to help detect abnormal tissue). If abnormal tissue is found, you may need a colposcopy (a visual exam of the cervix) or biopsy (taking a tissue sample for further evaluation).

If you're trying to conceive, learn the symptoms of ectopic pregnancy. If you suspect you're pregnant, see your doctor immediately. During pregnancy, seek regular prenatal care. If you go into premature labor, you may need bedrest, medications to stop labor or cervical cerclage (the surgical closure of the cervix to prevent it from opening prematurely). If you have trouble conceiving, seek infertility counseling.

Have regular mammograms. Although the debate on the timing of mammography continues, most health care professionals recommend regular mammograms every one to two years beginning at age 40 and annually beginning at age 50. The U.S. Preventive Services Task Force recommends mammograms every one to two years with or without clinical breast examination for women age 40 and older. Ultimately, the decision about when to begin mammography is between you and your doctor.

Discuss the risks and benefits of estrogen use with your doctor, whether it's for contraception or hormone replacement during menopause. To date, studies have not shown that this increased estrogen exposure is unsafe for DES daughters, but some doctors feel DES daughters should avoid taking medications that contain estrogen.

DES sons
Although less is known about DES sons, some potential problems have been identified.
Risks for DES sons
Researchers have found that DES sons have an increased risk of epididymal cysts (a noncancerous growth on the back of the testicle). They may also face an increased risk of several other problems, but further research is needed to be sure. These possible risks include:

testicular abnormalities (such as abnormally small or undescended testicles)
hypospadias (when the opening of the penis is located on the under side of the penis rather than the end)
abnormally small penis
There is some concern that DES sons may have fertility problems, but studies have not shown an increased risk of infertility. The risk of testicular or prostate cancer has also been questioned, but the results of studies have been unclear.

Recommendations for DES sons

Learn about the risks of DES exposure and keep up-to-date on the latest research findings.

Inform your doctor about your exposure to DES, including as many details as possible. Make sure he or she is well informed on the risks of men who were exposed to DES.

Do monthly self-testicular exams. Report any changes or abnormalities to your doctor.

After age 40, see your doctor for a yearly rectal exam to detect any signs of prostate cancer.

DES grandchildren
The long-term effects of DES grandchildren continue to be studied. Animal research has indicated possible effects on later generations, but the risk in humans has not been identified. DES grandchildren and their doctors should be informed of the exposure.