Women suffering from clear cell adenocarcinoma (CCA) or other cancers of the vagina or cervix might actually be victims of a pharmaceutical drug their mother took.
Diethylstilbestrol, or DES for short, was a synthetic hormone designed to prevent miscarriages. A variety of manufacturers sold this drug from the 1940s into the 1970s. Within those 4 decades, about six million women took the medication.
DES was pulled off the market once studies corroborated that DES caused serious side effects in women who were exposed to the drug while in the womb. Unfortunately, the effects of DES now affects the daughters and even some granddaughters of the women who took the drug over 50 years ago!
Who Are DES Daughters?
DES Daughters are the daughters of those women who took DES all those years ago. The effects of DES could even affect the granddaughters of those original women who took DES.
According to the CDC, about 1 to 1.5 in 1,000 DES daughters will develop CCA of the vagina and/or cervix.
What are the risks for DES Daughters?
Besides CCA and other forms of cancer in the vagina and cervix, a lot of DES women are also at a higher risk of having breast cancer. A recent study provides initial results linking exposure to DES before birth with increased rates of breast cancer. The study found that among study participants, DES Daughters were more likely to experience breast cancer than were unexposed women.
In participants over 40, DES Daughters were 2.5 times more likely than unexposed women to be diagnosed with breast cancer.
Incidence and Prevalence of Reproductive Tract Structural Differences
Reproductive tract structural differences are common in women exposed to DES in utero (i.e., DES Daughters).
- Approximately 1/3 of DES Daughters have vaginal adenosis.
- Abnormalities of the cervix – collars, hoods, septae, and cockscombs ? are found in up to 33% of DES Daughters.
- One study of DES Daughters experiencing infertility found abnormal hysterosalpingogram findings in 69% of the women. Of these, the T-shaped uterus is most associated with prenatal exposure to DES.
Recent studies have demonstrated an overall increase in infertility in DES Daughters. Up to 25% of women exposed to DES in utero may be infertile. DES exposure was most strongly associated with infertility due to uterine, tubal, and other problems. All women who may have been exposed to DES in utero who undergo infertility evaluation should have a hysterosalpingogram performed to assess for upper tract abnormalities.
What Should DES Daughters Do?
Preconception Planning and Pregnancy
Most DES Daughters who become pregnant carry a normal pregnancy to term. However, a higher than average risk of abnormal pregnancy has been consistently documented. Rates of miscarriage, ectopic pregnancy, and premature birth are higher for DES daughters than for the general population.
In women with documented reproductive tract structural differences, these rates are higher. The relative risk of miscarriage is 1.31 times the normal rate for the first trimester and 2.93 times the normal rate for the second trimester. The relative risk of ectopic pregnancy is 3.7 to 6 times higher for women with documented reproductive tract abnormalities. The relative risk of premature birth is 2.6 to 4.7 times higher for women with documented reproductive tract structural differences.
Steps You Can Take
DES Daughters should be referred to an obstetrician-gynecologist for preconception counseling and pregnancy management.
Care by a maternal-fetal medicine specialist should be considered, particularly for women with documented reproductive tract abnormalities and/or prior complications of pregnancy.
Preconception counseling should include a discussion of increased risks of infertility, ectopic pregnancy, miscarriage, premature labor and premature birth. Pelvic examination should be performed to assess for cervical abnormalities.
Early diagnosis of pregnancy is particularly important, because of the heightened risk of ectopic pregnancy. If patients develop bleeding and/or abdominal pain, they should be immediately evaluated for ectopic pregnancy with a human chronic gonadotropin level (HCG) and pelvic ultrasound.
In the past, because of the increased risk of miscarriage in this population, prophylactic cervical cerclage was advocated for pregnant women who had been exposed to DES in utero. However, conservative programs including frequent cervical examinations, bedrest, and cervical cerclage when indicated by signs and symptoms have been shown to be equally effective.
Risks of cervical cerclage in DES Daughters include an increased risk of scarring, as the procedure is often technically difficult because of anatomical abnormalities of the cervix.
*Please note we are not medical professionals and the suggestions listed above are CDC recommendations for DES Daughters to remain healthy and have a safe pregnancy*
How We Can Help
If you or a loved one is a DES Daughter with Clear Cell Adenocarcinoma (CCA) or other cancers of the vagina or cervix, you may be entitled to compensation. You can fill out the form below, call us at the number listed above or contact us for a free, no-obligation legal consultation.