DES FAQS
DES Frequently Asked Questions
What is DES?
DES is short for diethylstilbestrol: a synthetic hormone prescribed to pregnant women between 1940 and 1971. Believed to prevent miscarriages, DES was prescribed to approximately 4 million women in the US alone.
DES has been associated with genital and reproductive tract abnormalities in the daughters and sons of the women who took DES. It is estimated that as many as 10 million, or 1 out of every 20 people, in the United States is a DES-exposed mother, daughter, or son.
What health problems are associated with DES-exposure?
- A
previously rare cancer, clear cell adenocarcinoma of the vagina and
cervix, is linked to DES exposure in the daughters.
- Pregnancy
problems affect the greatest number of DES daughters. Studies
show that many women exposed to DES before birth are at a higher risk
for infertility, tubal pregnancy, miscarriage, and
premature delivery.
- DES
sons are also known to have genital abnormalities and may have
problems with infertility. Current research is studying whether there
is a relationship between testicular cancer and DES exposure.
- DES mothers are at increased risk for breast cancer.
What is clear cell adenocarcinoma?
Adenocarcinoma refers to a cancer occurring in glandular tissue. Before 1971 clear cell adenocarcinoma of the vagina or cervix was a rare disease, diagnosed primarily in women over the age of seventy. In 1971 doctors documented several cases of this cancer in young women whose mothers were prescribed DES during pregnancy. This led the FDA, in 1971, to ban the use of DES during pregnancy.
What are the chances of developing this cancer?
Researchers have estimated that approximately one in 1,000 DES Daughters are at risk to develop the cancer, although this number may turn out to be higher as the DES Daughters age. So far, clear cell adenocarcinoma has been found in DES daughters between the ages of 7 and 48.
It is important for DES daughters and their physicians to be aware that there is no specific age after which the risk for clear cell cancer is over. At this time the upper age limit for the development of the cancer is unknown.
The survival rate for the cancer is very high. More than 80% of the women who have had clear cell adenocarcinoma recover.
How is clear cell adenocarcinoma treated?
Treatment for the cancer varies, depending on a doctor's evaluation of a patient's condition. The most common treatment is surgery.
Surgery usually includes a radical hysterectomy (removal of uterus, fallopian tubes, and one or both ovaries), vaginectomy (removal of all or part of the vagina), and lymphadenectomy (removal of surrounding lymph gland).
A vaginectomy is necessary only if diagnosis includes cancer of the vagina.
Internal and external radiation may also be used to treat the cancer, alone or in conjunction with surgery.
What is "reconstruction" or reconstructive surgery?
"Reconstruction" refers to rebuilding of the vagina after a vaginectomy. A skin graft is taken from the patient's body (usually skin from the buttocks) and placed in the vaginal canal. The skin graft forms a new vagina around a temporary mold which retains the form of the vagina.
The DES
Cancer Network is no longer responding directly to email
inquiries. If you have a general
(non-cancer) DES-related question or concern, please contact DES
Action by calling the toll-free information line at 1-800-337-9288
or by sending a message tot desaction@columbus.rr.com.
The Web site address is www.desaction.org.
If your question or concern is cancer-related
please go the University of Chicago, DES Cancer Registry website
at www.obgyn.bsd.uchicago.edu/registry
or contact them directly by phone at 1-773-703-6671 or by email at danderso1@babies.bsd.uchicago.edu.
If you need to talk to someone about support for yourself or a family member, the moderators of both of the Web sites above will direct you to a DES-related clear cell cancer survivor.
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