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Who Are DES Daughters? What’s Their Risk of Developing a Rare Vaginal Cancer?

For over 30 years, from the late 1930s through the early 1970s, millions of pregnant women were prescribed a lab-manufactured estrogen called Diethylstilbestrol (DES) which was designed to prevent miscarriages and other problems during pregnancy. It wasn’t until 1971 that the FDA discovered DES could cause several serious health concerns, including a rare vaginal cancer in girls and women. After that, the drug was taken off the market. 

An estimated five to 10 million were exposed to DES in the womb from 1938-1971. Today, many women might not even know they are at risk, but scientists are calling them the “DES Daughters.”

While many women who were given the drug were identified and notified about the DES health concerns, thousands of others were not. Despite the best efforts to identify these women, many were not located. Could you be one of their daughters who was exposed to DES? If you were born between 1938 and 1971, you might be. 

DES Daughter Health Risks

According to the Centers for Disease Control, women exposed to DES before birth while in the womb are at an increased risk for a number of health concerns. However, it’s important to note you don’t have to be exposed to DES to have these health problems. Nevertheless, the research is clear that DES Daughters have elevated risk for:

Clear cell adenocarcinoma (CCA) - A rare type of vaginal and cervical cancer. Approximately one in 1,000 DES Daughters will be diagnosed with CCA. The risk is virtually non-existent among premenopausal women not exposed to DES. 

Abnormal cells in the cervix and vagina - These abnormal cells look like cancer cells, but they do not spread into nearby healthy tissues like cancer cells do and are often called pre-cancers. This condition is not cancer, but it might develop into cancer if it’s not treated.

Infertility - While 15 percent of all women struggle with infertility, DES Daughters have a 33 percent chance of having reproductive problems.

Reproductive tract structural differences - DES-exposed daughters may have a vagina, uterus, or cervix with an unusual shape. Most of these changes do not threaten the woman’s life or health but some can cause problems for women who want to get pregnant or cause other reproductive health problems.

Pregnancy complications - In 2011, the National Cancer Institute published a study that showed DES exposure led to a fivefold increased risk of having a preterm delivery as well as higher rates of problems during pregnancy including tubal pregnancies, preeclampsia and miscarriage.

Breast cancer - From the American Cancer Institute’s website:

“According to the largest study to date, DES-exposed daughters have a slightly increased risk for breast cancer. This increased risk was not seen in some other studies. So far, the total overall increase in risk appears to be only about two percent (in this study, the group of women without DES exposure had about a two percent risk of breast cancer, while the group of women with DES exposure had about a four percent risk). But it’s important to note that the women in this study (and many DES-exposed daughters in general) are still younger than the average age at which breast cancer usually occurs. The increased risk of breast cancer may become larger as these women get older. This issue is still being studied.”

Were You Exposed to DES?

In many cases, it may not be possible to find out if DES was used. And there are no medical tests that can tell you if you were exposed to DES. 

If you can’t find this information and are unsure of your (or your mother’s) exposure, the CDC’s DES Self-Assessment Guide can help you figure out how likely it is. It can be found online at www.cdc.gov/des/consumers/guide/index.html

What’s Next If You’re a DES Daughter?

If possible, find out when during the pregnancy your mother took the drug and inform your doctor that you were exposed to DES. 

If you are among the DES Daughters, then regular screenings are a must. Discuss with your doctor which tests are appropriate for you and when you should have them. For instance, screening for CCA isn’t normally done during routine exams, so your doctor needs to be aware that you have elevated risk. 

Many doctors recommend DES Daughters have regular, thorough exams every year. These exams may include the following:

Pelvic exam - This is a physical exam of the reproductive organs where the doctor feels the vagina, uterus, cervix, and ovaries for any lumps. An exam of the rectal area may be included as well. Sometimes, feeling for lumps is the only way to find an abnormal growth.

Pap test - A routine Pap test is not enough for DES-exposed daughters. The cervical Pap test must be done along with a special Pap test of the vagina called a four-quadrant Pap test, in which cell samples are taken from all sides of the vagina.

Iodine staining of the cervix and vagina - An iodine solution is used to briefly stain the linings of the cervix and vagina. This helps the doctor find adenosis (an abnormal growth of glandular tissue that is not cancer) or other abnormal tissue.

Colposcopy - For this exam, the doctor uses a magnifier to look closely for abnormal tissue in the vagina and cervix. Some doctors do not do this for everyone, but this is commonly done if the Pap test result is not normal.

Biopsy - Small samples of any parts of the cervix or vagina that look abnormal on other tests are removed and looked at under a microscope to see if cancer cells are present.

Breast exams and screening tests - DES-exposed daughters should follow current breast cancer screening recommendations. (For American Cancer Society recommendations on breast cancer screening, see Breast Cancer: Early Detection.) Women should report any new breast lumps or other breast changes to a doctor right away.

Third Generation DES Daughters

The so-called “Third Generation DES Daughter” is just now beginning to reach the age when relevant health problems like reproductive disorders can be studied, so it is unclear whether the risks carry on in the offspring of original DES daughters.

DES Sons

The effect of DES on sons born between 1938 and 1971 is unclear, but some studies have found that sons have a higher risk for testicular abnormalities like undescended testicles or the development of cysts and inflammation in the testicles. However, men who were exposed to DES in the womb do not appear to have an increased risk of infertility, even if they do have abnormalities of the testicles.

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