Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, February 16, 1993 TAG: 9302160141
SECTION: EXTRA PAGE: 3 EDITION: METRO
SOURCE: Jane Brody
DATELINE: LENGTH: Long
ADULT YEARS BRING MANY MORE AFFLICTIONS FOR DES BABIES
More than two decades ago, the alarming discovery of a rare vaginal cancer in eight young women first alerted doctors to the dangers of prescribing the synthetic hormone diethylstilbestrol (DES) in pregnancy.The cancers, which occurred in girls who had been exposed to DES before birth, provided the first known example in people of the induction of cancer by a substance that crossed the placenta.
Now researchers say that vaginal cancer, though very serious and possibly life-threatening, could be the least of the problems linked to prenatal exposure to DES, an estrogen-like drug that was given to 3 million to 6 million pregnant women in the hope of preventing miscarriage.
Fortunately, vaginal cancer has turned out to be a less common consequence of prenatal DES exposure than the first cases suggested. Later studies showed that a girl who was a DES baby has about 1 chance in 1,000 of developing cancer of the vagina or cervix.
Through regular checkups, these cancers can be detected early and cured, although the treatment usually results in sterility.
In recent years a host of other far more common DES-associated health problems have come to light in DES-exposed sons as well as in daughters. Most vexing, perhaps, have been various reproductive and urological abnormalities that in women impair fertility or cause miscarriage or premature births.
When DES-induced genital abnormalities are known in advance of pregnancy, doctors can often adjust obstetrical treatment to help assure a normal birth.
DES-exposed sons can also experience abnormal development of the reproductive organs, including missing or undescended testicles, testicular cysts, abnormally small penises and low sperm counts that can impair their ability to father a child.
There has also been a suspiciously large number of cases of testicular cancer among DES sons, although the link to prenatal DES exposure has yet to be examined scientifically.
But the answer may be available within a few years as a result of $2.9 million in federal funds that were recently allocated to underwrite further studies of health problems in DES sons as well as in daughters and their mothers.
Now, as most of the people exposed to DES before birth reach mid-life, a more insidious hazard has become apparent: damage to the immune system that may result in an increased risk of developing autoimmune disorders.
Studies in research animals and in cells grown in laboratory dishes have shown that DES can render certain aspects of the immune system hyperactive, prompting them to turn against the body's own tissues.
Preliminary research in DES daughters suggests that related immune problems may include a thyroid condition called Hashimoto's thyroiditis, pernicious anemia, myasthenia gravis (a nervous disorder that weakens muscles, especially in the face and neck), a serious intestinal disorder called regional enteritis and possibly chronic fatigue syndrome and multiple sclerosis.
Continuing surveillance of DES sons and daughters may reveal still further immunity-related problems.
As with vaginal cancer, the risk of developing immunological problems seems to be related to the dose and duration of DES treatment of their mothers, some of whom were given the hormonal drug from the first to the last month of pregnancy.
It is also not yet known whether DES will cause problems in the daughters when they reach menopause, and some researchers and advocates insist that DES "babies," both men and women, be followed for life to define the possible health risks fully and possibly to reduce them.
Meanwhile, frequent checkups of DES-exposed men and women are being urged to detect and treat any problems that might develop. Problems to be on the lookout for include breast cancer in women and prostate problems in men as they age.
Thus far, nearly 600 cases of DES-related cancers of the vagina or cervix have been reported to a national registry. Affected women and girls have ranged in age from 7 to 31, with the peak incidence of cancer occurring at the age of 19, or before most of the young women would have tried to have children.
One frequent sign of possible cancer in a DES daughter is excessive vaginal discharge or vaginal bleeding, but experts caution that cancer can be present even in women with no symptoms.
By now everyone who had experienced prenatal exposure to DES should be at least 19 years old, since the Food and Drug Administration banned the use of the drug during pregnancy in 1973. And by now all the DES daughters should have been examined at least once and preferably several times by a gynecologist familiar with the effects of DES.
If they have not been checked, no more time should be wasted in getting a thorough pelvic examination, including inspection of the external genital organs and the inside of the vagina, a Pap smear of the cervix, iodine staining of the vaginal lining and cervix and examination with an instrument called a colposcope that can reveal telltale cellular changes in the vagina.
Experts suggest that the examination be done once a year, or more often if abnormalities are noted.
DES sons are far less likely than daughters to have had any examination for effects of the hormone. But experts say they should also be examined by a urologist for genital abnormalities, as well as for testicular cancer, which is curable in 95 percent of cases if detected early.
As explained by Michael Freilick, who operates the DES Sons Network, a voluntary information and counseling service: "Men are much less likely to talk about such problems and many do not even know that they were exposed to DES. I didn't myself, until I got testicular cancer at age 29 and my mother told me she took DES when she was pregnant with me."
Freilick, who is now 39 and who recently married for the first time, believes his cancer treatment rendered him sterile. He lives in Cherry Hill, N.J., and can be reached at 104 Sleepy Hollow Place, Cherry Hill, N.J. 08003. He urges every DES son to get an annual urological examination and to do monthly self-examination of the testicles.
Jane Brody writes about health issues for The New York Times.
930216 BRODY-HEALTH STORY #14863 TOPIC TUESDAY KEYWORD DESK AUTHOR:APA631602/16/93\ TUESDAY EXTRA, brody, PAGE 3 type headline type author
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