Yourlawyer.com (DES News) http://www.yourlawyer.com/topics/overview/des Sat, 21 Nov 2009 08:21:13 -0800 pixel-app en Daughters face DES drug cancer risk http://www.yourlawyer.com/articles/read/12046 Mon, 07 Aug 2006 00:00:00 -0700 http://www.yourlawyer.com/articles/read/12046
The drug, prescribed to women until 1975 to protect against miscarriage and combat morning sickness, has already been found to have increased the risk of breast cancer in mothers who took it.

But now it appears the legacy has been passed onto their daughters - with the dangers increasing as they approach menopause, the Daily Mail reported.

According to the newspaper, scientists at Boston University said women whose mothers took DES had a 40% increased risk of breast cancer. The danger posed by DES increased with age.

The researchers also said that the greater the amount of the drug taken by the mother the more likely the daughter would develop the cancer.

The scientists compared rates of the disease in 4,000 daughters of those who took DES and 2,000 who had not taken the drug.

Lead researcher Professor Julie Palmer said: "This is really unwelcome news because so many women worldwide were prenatally exposed to DES and they are just now approaching the age at which breast cancer becomes more common." She said those who were exposed to DES should be screened regularly for breast cancer.

DES was withdrawn after children suffered disorders of the reproductive system, including cancers of the vagina and low sperm counts and increased risk of testicular cancer in men.

Heather Justice, of DES Action UK told the Daily Mail: "We've known since the seventies about the risk of vaginal cancer, and now as these women are getting to the menopause and there are hormonal changes, we are seeing breast cancers starting to emerge."

She added: "People should be asking their mothers whether they can remember being prescribed it during their pregnancy, then insisting on proper screening and care."]]> STUDY SUGGESTS THAT DISEASES CAUSED BY SOME TOXINS MAY BE PASSED DOWN THROUGH SEVERAL GENERATIONS http://www.yourlawyer.com/articles/read/9962 Sun, 05 Jun 2005 00:00:00 -0700 http://www.yourlawyer.com/articles/read/9962
Unfortunately, the drug has had a devastating effect on the female offspring (and possibly even the grandchildren) of women who took DES. Cancer, infertility, and other permanent injuries have been linked to DES. There is also growing suspicion that DES may also have had adverse effects on male children of DES mothers.

Now, an animal (rat) study published in the journal Science has produced evidence that certain toxins may poison and pass diseases down for up to four generations. The researchers from Washington State University (led by Dr. Michael Skinner) exposed pregnant rats to a commonly used vineyard fungicide (vinclozolin) and a pesticide (methoxycchlor) during the period when the sex of the offspring was being determined. The exposed rats produced male offspring with low sperm counts and impaired fertility.

When these offspring were mated with healthy females, the male offspring had the same problems. This pattern persisted through at least four generations and affected over 90% of the male offspring in each of those generations. Dr. Skinner believes diseases like breast and prostate cancer, which are becoming more common, may be linked to similar trans-generational toxic exposure. It may also mean that exposure to environmental toxins may play an important role in the evolutionary process itself.

Since the levels of toxic exposure in the study were very high, the extent to which the effect may be concentration related is unclear. Thus, research needs to be done with much lower doses. Nonetheless, Dr. Skinner sees the study as "a new way to think about disease."]]> DES Exposure May Impair Later Function of the Uterus http://www.yourlawyer.com/articles/read/9445 Wed, 09 Mar 2005 00:00:00 -0800 http://www.yourlawyer.com/articles/read/9445
DES, a synthetic estrogen, was prescribed to prevent miscarriage in many women who were pregnant between 1941 until 1971. In 1971, DES was banned in the United States due to concerns about the occurrence of cancer and infertility in the daughters of women who took it.

Several millions of pregnant women were treated with DES and we have continued to study and model the disease since it provides unique insights into what estrogenic chemicals may do to the developing fetus, says study co-author John McLachlan, director of the Center for Bioenvironmental Research at Tulane and Xavier Universities. There are other chemicals in our environment the results of industrial, agriculture and chemical processing that, while their estrogenic affect is weaker, may affect developing embryos in the same way. We need models to understand the cellular and genetic mechanisms by which environmental chemicals work. This study is a step in that direction.

Exposing a newborn mouse to DES may interfere with the proper development of the uterus, say Tulane University researchers. In this study, the scientists provide evidence that exposure to DES early in life can change the way genes are expressed in the uterus of mice long after the chemical treatment is stopped. This work is on the cutting edge of an area of scientific research called genetic imprinting, say the researchers.

"The results of this study and those from other labs suggest that some diseases seen in adults may have started with exposure to chemicals while in the womb, McLachlan says. This is a whole new kind of birth defect.]]> Warning On Miscarriage Drug http://www.yourlawyer.com/articles/read/8147 Tue, 08 Jun 2004 00:00:00 -0700 http://www.yourlawyer.com/articles/read/8147
Drugs safety watchdogs called for women between 30 and 60 to ask their mothers if they had used a medication called Stilboestrol, also known as Diethylstilboestrol (DES).

It is believed that up to three generations of Australian women could be at risk of vaginal cancer, infertility and pregnancy complications as a result of the drug, which was widely used in Australia until 1971.

Therapeutic Goods Administration chief John McEwen said yesterday: "Women in their 30s and 40s should ask their mothers if they used anything to prevent miscarriage, try to find out what it was and talk to their general practitioner.

"They should get a referral to a gynaecologist."

Women who took the synthetic hormone also have an increased risk of breast cancer. Studies on mice have indicated the danger could even be passed to their grandchildren.

Men born to these women face increased risk of testicular cysts.

DES was prescribed by obstetricians and GPs in the form of tablets, injections, suppositories and pregnancy vitamins from 1948.

New guidelines for pap smears and mammograms are being devised for women whose mothers used the hormone, but Dr McEwen urged them to have the regular two-yearly pap smear and mammogram in the meantime.

Gynaecologist Dr Jules Black, an expert in the disease, said women at risk should have annual pap smears and an additional annual vaginal swab.

The alert is contained in the latest Adverse Drug Reaction Bulletin.

The TGA said it felt the need to alert women and doctors about the drug's side effects because women at risk may have been too young to remember publicity about it in 1971. It said at least 150,000 women were affected.

The drug went out of use in 1971 when the US Food and Drug Administration acted on a study that linked it to increased rates of a rare form of vaginal cancer - clear cell carcinoma.

Daughters of women who used the drug have a one in 1000 chance of contracting it.

The TGA says they also have a 90 per cent chance of having a benign growth on their cervix or vaginal wall. Many have a T-shaped uterus. They have an increased chance of being infertile.]]> Children, Even Grandchildren Affected By DES Legacy http://www.yourlawyer.com/articles/read/6690 Fri, 26 Sep 2003 00:00:00 -0700 http://www.yourlawyer.com/articles/read/6690
And for years Vanselous gave credit for that solitary healthy delivery to diethylstilbestrol, or DES, a drug that she and nearly 5 million other would-be mothers were prescribed from 1938 to 1971 under the belief that the synthetic hormone would help them build families where none seemed possible.

"My doctor told me he had the magic bullet," recalled Vanselous, 68, who was taking as many as 20 of the small red DES tablets a day when she was seven months pregnant. "He said I'd have a bigger, healthier, brighter child."

But DES did not lead to healthier babies, nor did it prevent miscarriages, according to research that began appearing in 1953. What it did lead to was a host of health problems for mother and child. Widespread use of DES on pregnant women was halted in 1971, after a study linked clear cell adenocarcinoma, a rare cancer of the cervix and vagina, to those exposed to the drug in the womb.

Other children, like Vanselous's daughter, Jill Murphy, suffered malformed reproductive organs, which would later lead to increased infertility, tubal pregnancies and miscarriage, effectively robbing many of the chance to bear their own children.

Exposure to the drug also harmed male children, who face an increased risk for epididymal cysts non-cancerous growths on the testicles and varicose veins on the testicles. Now, research is beginning to emerge about possible risks to a third generation the grandchildren of women who took DES. Experts worry that many in this group the oldest are young adults are unaware that they were exposed to the drug and may be at risk for health complications.

Because of that concern, coupled with the public's fading memory of DES and its dangers, the Centers for Disease Control and Prevention (CDC) spent three years developing a public education campaign. Rolled out in March, DES Update features a Web site (www.cdc.gov/DES) to explain the impact of the drug and disseminate the newest research to consumers and health care providers. It includes a tool to help individuals assess their own possible exposure.

"In a sense this is a very important time in the DES story because our ability to ask women who took DES if they did is passing, and physicians who prescribed the drug have gone out of practice or their records are destroyed," said CDC spokeswoman Marsha Vanderford. "While the opportunity to find out if you were exposed is expiring the health effects are ongoing."

Vanselous recalls she was sitting in a hair salon in 1971, idly flipping through a women's magazine, when she happened on an article about DES and its newly established link to vaginal cancer.

She kept the news from her daughter for six years until Jill began to menstruate, a time when specialists recommended the young girl be examined for complications. Tests revealed Jill had a malformed cervix, a common result of DES exposure. Doctors warned that she would live with the threat of vaginal cancer until her twenties. There were, as far as researchers knew, no other problems associated with the drug.

But the other risks of DES became clear in 1998 as Murphy, then 34, and her husband, Luc, began to try to have children.

Murphy repeated her mother's history of failed pregnancies. Tests revealed she has a T-shaped uterus, a classic symptom of exposure to DES. After three failed pregnancies, the Alexandria, Va. couple conceded they would have no biological children.

"I knew about the cancer but never, ever, was I told that I could have fertility problems," said Murphy, one of thousands of women who have filed suits against DES drug makers and won settlements since 1979. "DES took my right to have children. It took the rights of thousands of women."

While damage claims have not been easy to prove, almost every case has been settled before trial, with payouts ranging from $50,000 to $4 million. Publicity from those lawsuits and years of grassroots organizing by women's health groups led Congress in 1992 to create a program of research, outreach and education about DES.

Every year scientific studies reveal new repercussions of the drug, which was taken by an estimated 4.8 million women, who then exposed an estimated 4.8 million children.

To date, most of the research has focused on the troubles suffered by daughters exposed in utero. According to findings published in 2001 in the American Journal of Epidemiology, these women have a higher infertility rate and are two times more likely to have a miscarriage or premature labor than unexposed women. A study released last year by National Cancer Institute researchers showed, at least preliminarily, that DES daughters over age 40 are 2.5 times more likely to experience breast cancer than unexposed women in the same age range.

With the exception of testicular cysts, no health effects have consistently been found in DES sons. But studies sponsored by the National Cancer Institute continue to monitor health problems, such as the risk of testicular cancer, among these men.

Third-generation children the offspring of DES daughters and sons are just beginning to reach the age when relevant health problems can be studied.

Research published last year by the Netherlands Cancer Institute suggests that hypospadias a misplaced opening of the penis occurred 20 times more frequently among third-generation sons.

Experts urge caution about the future. In laboratory studies of elderly third-generation DES-exposed mice born to DES daughter mice, an increased risk of uterine cancers, benign ovarian tumors and lymphomas were found. Third-generation male mice were shown to be at risk for certain reproductive tract tumors.

Researchers continue to look for evidence of reproductive abnormalities and cancers among third-generation DES women.

A report published in August in the Journal of Pediatric Hematology/Oncology suggested a possible link between a 15-year-old girl's rare case ofsmall-cell carinoma of the ovary and her maternal grandmother's use of DES.

It was English biochemist E. Charles Dodd who in 1938 synthesized the first orally administered synthetic estrogen. Two years later, the Food and Drug Administration (FDA) approved the drug, DES, as a treatment for menopausal symptoms.

DES started to become popular in 1947, after publication of an article by Harvard University professors George Smith and Olive Watkins Smith, who theorized that high doses of DES could prevent miscarriage.

The truth about DES didn't surface until 1953, when William Dieckmann, a doctor at the University of Chicago's Lying-In Hospital, conducted the first controlled, double-blind study on the use of DES during pregnancy. His conclusion: DES was ineffective against miscarriage.

"But (they) kept right on prescribing," said Cody, 80, who was put on DES two years after Dieckmann's study was published. She took the pills four times a day until her 37th week of pregnancy. In total she ingested more than 10 grams of DES as much estrogen as is found in 500,000 of today's low-dose birth control pills, she said.

It would be nearly 16 years before the research of Arthur Herbst, a physician at Massachusetts General Hospital, linked the drug to eight rare cases of vaginal cancer in DES daughters.

The FDA responded in 1971 by issuing a bulletin to physicians. It said DES should not be prescribed for pregnant women. Paving the way for other hormone replacement therapies, DES was later used for hundreds of treatments from prostate cancer and acne and menopause symptoms, to suppressing breast milk and stimulating livestock growth. Today it is mainly used in veterinary medicine to treat incontinence in dogs and cats.]]> Drug Prescribed To Pregnant Woman Causing Health Problems http://www.yourlawyer.com/articles/read/6674 Mon, 15 Sep 2003 00:00:00 -0700 http://www.yourlawyer.com/articles/read/6674
According to the Centers for Disease Control and Prevention, diethylstilbestrol, or DES, was used between 1938 and 1971. DES, a synthetic hormone prescribed to pregnant women from 1938 to 1971, was supposed to prevent miscarriages.

In 1971, after a Food and Drug Administration recall, doctors stopped prescribing the drug. But millions were exposed.

A local woman whose mother took DES shared her story about the drug's serious side effects.

"My mom and I are really alike. People say we look alike. We act alike," Kayla, 18, said.

Kayla wonders if she's in line for health problems like her mother, Karin.

Karin was told years ago that her cervix was abnormally shaped and that extra tissue needed to be removed.

She dismissed the doctor's advice. It was just the beginning.

"And then in 1983, I got pregnant the first time. I miscarried that one," Karin said.

"I got pregnant again later in 1983 and that one I miscarried also," Karin said.

It happened again and again eight pregnancies and six miscarriages. It was devastating for Karin.

"This is me with Kayla. I was pregnant in this picture," Karin said.

Karin had two healthy babies, Kayla and Kyle.

"They are my miracles. They truly are my miracles. I loook at them and I think I am so fortunate to have them. (I am) so lucky. I can't even tell you," Karin said.

After the birth of her son, another doctor told Karin something she'd heard years earlier that she had an abnormal cervix, an earmark for DES.

"I did talk to my mother about it, and she had recalled having been given something as she was threatening to have a miscarriage," Karin said.

Dr. Janet Osborne, from the Medical College Of Wisconsin, said there are confirmed health risks associated with DES daughters.

"We do see higher rates of infertility in DES daughters, higher rates of pregnancy losses, first and second trimesters pregnancy losses for these women, higher ectopic pregnancy rates," Osbourne said. "The most serious side effect is this very rare cancer called clear cell carcinoma."

In 1998, Karin told 12 News, Karin was diagnosed with cervical cancer. She had nearly her entire cervix removed.

"What was all related or possibly related? I have no idea, but that's the question. There needs to be a lot of research done on this. Not just for me and for women like me, for the next generation and maybe their next generation," Karin said.

This is something Kayla has on her mind as she heads off to college.

"They don't know that much so they're just guessing that the effects on my generation could be very similar to what her generation was," Kayla said.

"To this day, there are not any case reports on effects on granddaughters. People have looked at it. The studies that have been reported are a very small series. There's a series out of Netherland that looked at DES grandsons, and maybe that there was a higher incidence of a condition which is a congenital abnormality of the formation of the male genitalia," Osbourne said.

"Don't neglect your health. Just don't neglect it. Because if I would have let it go much longer, I would have probably been much further along in cancer. Who knows if I'd even be here seeing my daughter go off to college," Karin said.

It's something you should ask your mother if you were born in the years from 1938 to 1971 and inform your doctor. Osborne said there's still a question as these DES daughters age whether they're at an increased risk of breast cancer.

There's also a question about DES exposed sons, possibly having an increased risk of testicular cancer. The CDC is going to address the latest research findings in DES sons online this Wednesday.]]> Hormone Given To Pregnant Women Leaves A Legacy of Suffering http://www.yourlawyer.com/articles/read/5880 Thu, 08 May 2003 00:00:00 -0700 http://www.yourlawyer.com/articles/read/5880
What she doesn't do is dwell on DES, the synthetic estrogen her well-intentioned mother took while pregnant with her. Mom was older 42 and had a prior miscarriage, so the drug was prescribed to prevent another one.

But exposure to the hormone triggered a rare vaginal and cervical cancer in Leavitt four decades later. Within a week of the diagnosis, she underwent a radical hysterectomy.

"It was stunning," she says. "I don't know what other word to use."

The cancer strikes one in a thousand daughters exposed in the womb, but usually in her late teens or early 20s.

Now, eight years later, Leavitt isn't consumed by the consequences of DES.

Questions, though, still linger of what long-term, unidentified effects may be in store for the estimated 5 million to 10 million people exposed.

"We don't know if there will be another peak," says Leavitt, a petite woman with thin-framed glasses and short, gray-flecked brown hair.

Doctors prescribed DES, or diethylstilbestrol, to pregnant American women from 1938 to 1971. They thought it would prevent miscarriages or premature deliveries. It didn't.

"It was the era of the miracle drugs like penicillin and other antibiotics," says Pat Cody, co-founder and program director of the advocacy group DES Action USA. "Everybody wanted to believe; I wanted to believe. I thought it was wonderful. Isn't science great?"

Instead, women who took DES have a 30 percent higher risk of breast cancer. Their daughters are 40 times more likely to develop clear cell adenocarcinoma, the cancer that Leavitt survived. There's also an increased risk of complicated pregnancies, infertility and irregularly shaped reproductive tracts. Their sons are more likely to have non-cancerous growths on the testicles and other genital abnormalities.

Problems linked to DES aren't new. What's growing, though, is the sense of the unknown.

Is the population exposed in the womb more vulnerable to additional health troubles such as chronic or autoimmune diseases and other cancers? Are DES daughters especially sensitive to hormone replacement therapy?

Will the third generation suffer any consequences? There have been some indications so far, such as elderly lab mice whose mothers were exposed in utero showing an increased likelihood of uterine cancers and tumors.

The Centers for Disease Control and Prevention, responding to a congressional mandate, recently launched an educational campaign aimed at alerting the public and physicians to DES-related health risks. Still, even it says there are no definitive answers.

"The issue with DES is that the story's not over," says Marsha Vanderford, deputy director of communications for the CDC's National Center for Environmental Health.

That's not good news for the second generation, whose average age is 48 Leavitt's age.

Around the time they were born, a study published in the American Journal of Obstetrics and Gynecology in 1953 found DES ineffective in preventing miscarriages and premature deliveries.

But the news wasn't enough to dissuade doctors from prescribing it. DES has been called both "snake oil" and "wonder drug," dispensed for multiple reasons, including as a morning-after pill and to stop lactation after pregnancy.

It was even given to livestock as a growth supplement, exposing countless people. The Food and Drug Administration eventually banned usage, though as recently as 1999 U.S. meat imported to Switzerland showed traces of the hormone.

It was a "huge global health disaster," says Margaret Braun, a DES daughter and cancer survivor from New York who has written a book detailing the experiences of exposed people in their own words.

Braun spoke last month at the UW Women's Center, inspiring her audience to open up to each other. "People don't have reason to talk about their DES exposure unless it's brought up," Braun says.

The reasons vary. There's a shame that some mothers feel, even though they took DES with the best of intentions. The problems are mostly unseen and deal with very private parts of the body. It was an embarrassment to the medical community.

DES did receive a flurry of attention after a 1971 study in the New England Journal of Medicine tied it to a rare vaginal and cervical cancer in young DES daughters. The FDA responded with a bulletin warning physicians of the potentially harmful effects of prescribing DES to pregnant women. Studies followed, support groups formed, lawsuits were filed against the pharmaceutical companies.

Skip forward to a new century, and that urgency is lacking.

Dr. Robert Hoover, director of epidemiology and biostatistics at the National Cancer Institute, occasionally lectures medical students about DES. In the late 1970s, awareness was high. Now, he says, maybe two people usually middle-aged in a class of 50 or 60 know about DES.

"It sort of, I guess, became old news."

But it shouldn't be, Hoover and others argue.

Leavitt was a Harvard student when she learned of her DES exposure. She'd graduated from high school in 1972 and traded her Cleveland upbringing for Cambridge. In college, she lived across the hall from the man she would eventually marry.

Her mother called one day after reading about DES, realizing she'd taken it with Anne, her third daughter.

Leavitt responded by undergoing thorough pelvic exams twice a year and learning all she could about the drug.

Because there were indications her children might be premature, she included bed rest with all her pregnancies. Leavitt delivered three healthy, full-term babies now 12, 16 and 19 years old.

She never agonized over the risk of cancer. "I didn't worry about it," she says. "I just knew how unlikely it was."

In 1995, a biopsy revealed the disease. Within a week, she had a hysterectomy. Leavitt felt blessed to already have given birth to three children, but the surgery left no room for the possibility of more.

'Why are they asking that?'

She faced problems conceiving, experienced serious complications during her pregnancy at six months her doctor had to sew up her shortening cervix and delivered a premature baby.

Harry, now 13, came two months early and stayed in the hospital for several weeks. Powers and her husband weren't able to have another child, despite "four to five years of increasingly invasive procedures."

She can't pin her problems directly on DES "a court of law would say no" but in her heart she feels differently.

"If there were a handful of DES daughters in the country and things happened to a couple of them, you probably couldn't make too many generalizations. But given it's similar things that have happened over and over, that would give me the idea that it was related," she says.

Anecdotal evidence illustrating the effects of DES abounds, but concrete scientific findings are scarce. Researchers are tracking the exposed population and experimenting on mice to examine problems that include breast cancer in women, testicular cancer in men and possible interaction with hormone replacement therapy. They're also monitoring things such as heart disease and diabetes, which so far have shown no connection to the hormone, and assembling a cohort of DES granddaughters.

Every few years, the National Cancer Institute mails a survey to Powers' Seattle home inquiring about her health.

When it comes, she and her younger sister, also involved in the study, start a conversation with: "Why are they asking that?"

Questions about autoimmune problems, for example, fuel their curiosity. There's no clear evidence yet of its relationship to the drug.

And that's a source of frustration, the lack of information available. "It takes forever for them to figure out anything," says Powers, 49.

Life-saving knowledge

Powers and Leavitt don't speak about DES with bitterness; they speak to boost awareness.

Leavitt even traveled to Atlanta twice as a representative of DES Cancer Network, a support group for survivors, to help the CDC shape its campaign.

Despite their problems, both women were lucky.

Leavitt's mom knew she had taken DES, at the time marketed by numerous companies under multiple names, and sometimes as vitamins. In Powers' case, her mother's physician urged his patient to have her children examined. Her complete medical records led to her two younger daughters' participation in a DES study.

But not all doctors were honest. Fearing lawsuits, some even refused to release medical records, destroying them instead. They left a large population that still knows nothing of its exposure.

Finding documents now through aging or deceased physicians and pharmacists is unlikely. After her surgery and out of curiosity for specifics, Leavitt tried to locate her mother's obstetrician, who had died long ago, and the pharmacy, which had gone out of business.

Though she isn't worried about her own daughter, Leavitt stresses the importance of following the exposed population and staying informed. She calls herself "living proof" of two things: that middle-aged DES daughters can still develop the cancer and that it's treatable.

"My life was saved by knowledge."]]> Hidden Toll of DES, A Generation Later Anti-Miscarriage Drug Now Linked To Cancer http://www.yourlawyer.com/articles/read/5466 Mon, 14 Apr 2003 00:00:00 -0700 http://www.yourlawyer.com/articles/read/5466
Yet for more than three decades, doctors routinely prescribed diethylstilbestrol di-ETH-il-stil-BES-trol, or DES to millions of U.S. women to prevent miscarriages. They finally stopped in 1971, when scientists first recognized that DES could harm daughters born to women who took it while pregnant.

Although more than 30 years have passed since a U.S. obstetrician prescribed the synthetic estrogen, DES continues to plague those who took it and their children, many of whom have no idea they were exposed.

For the most part, babies whose mothers took DES reached their teens or young adulthood before problems arose. Even then, their ''birth defects,'' such as an increased risk of cancer or a misshapen uterus, weren't apparent to the casual observer.

That is one reason why, in 2003, the Centers for Disease Control and Prevention has launched an educational campaign about DES. The campaign, targeting lay people as well as doctors, features a Web site www.cdc.gov/DES with the latest information about the drug's lingering effects.

''It's a linguistic challenge,'' says DES daughter Margaret Braun, author of DES Stories (Visual Studies Workshop Press, 2001). ''We say DES was, and we forget that we're talking about a toxic chemical exposure with a lag time before the injuries may surface.''

DES activists speculate that half of those exposed to the drug, while pregnant or in the womb, don't realize they were. The drug went by scores of brand names, and some pregnant women assumed that the pills were prenatal vitamins.

Many who do know they were exposed, as well as many of their doctors, activists say, mistakenly think they are past the age when DES could hurt them.

In reality, ''it's not going to go away until we all die,'' says DES daughter Susan Helmrich, 47, co-founder of the DES Cancer Network with Braun.

As growing numbers of DES daughters reach the age when breast cancer and other hormonal-related malignancies generally become more common, scientists wonder whether they'll see an upswing in cases.

And preliminary research found an elevated rate of a benign genital defect in sons of DES daughters. That finding, coupled with a higher rate of tumors in offspring of mice exposed to DES in the womb, raises concerns that problems caused by the drug might not go away even after everyone who was directly exposed has died.

Helmrich was only 21 and had just graduated from college when she was diagnosed with a rare cancer called clear cell adenocarcinoma, a hallmark of DES exposure in the womb.

''I was an athlete in college,'' says Helmrich, of Berkeley, Calif. ''I looked healthy. I looked fine.'' Doctors removed the cancer and surrounding tissue in a 10-hour operation.

Helmrich's mother, now 76, was diagnosed with breast cancer at age 39, years before researchers began noticing that DES mothers have a higher breast cancer risk than other women.

Four years ago, Helmrich, who never smoked, learned she had lung cancer. Scientists don't think DES is linked to lung cancer, says Helmrich, a Ph.D. epidemiologist, but she does.

''My life has been completely affected, altered, influenced, changed by my DES exposure,'' she says. ''Every single thing in my adult life: the way I live, the way I eat, the way I worry.''

DES daughter Susan Wood, 44, says she doesn't think about the drug every day. ''But I do miss my sister every day,'' says Wood, the middle of three siblings who were all exposed to DES in the womb.

Wood's older sister, Betsy, died at age 34 of clear cell adenocarcinoma. Her younger brother was diagnosed with testicular cancer at 23 but is now cancer-free.

Wood, who has had reproductive problems, directs the Food and Drug Administration's Office of Women's Health. DES did not drive her decision to become a scientist, but ''it adds to my perspective on what I do in women's health.''

Wood and Helmrich were adolescents when U.S. doctors finally stopped prescribing DES to pregnant women. The drug received a one-two punch in 1971:

* In April, researchers reported in The New England Journal of Medicine on eight cases of clear cell adenocarcinoma in women decades younger than when it usually is diagnosed. In every case but one, their mothers had taken DES while pregnant. That November, the FDA issued a bulletin telling doctors to stop treating pregnant women with the drug.

Robert Hoover, a National Cancer Institute medical epidemiologist who studies the drug's effects in people, says the odds of a DES daughter developing clear cell adenocarcinoma appear to be one-in-1,000 to one-in-1,500.

Nora Cody, executive director of DES Action, a non-profit consumer group based in Oakland, says many doctors are misinformed about the disease. ''They think that the cancer risk goes away when you turn 30 or 35,'' Cody says.

But it doesn't. University of Chicago obstetrician/gynecologist Arthur Herbst, lead author of the first paper to link DES exposure to the rare vaginal cancer, maintains a registry of women diagnosed with the disease. Of the registry's nearly 800 women from around the world, Herbst says, the oldest were in their early 50s when diagnosed.

Infertility problems more likely

Though the vast majority of DES daughters will not develop cancer, many have experienced reproductive problems. In one study, DES daughters were 80% more likely than unexposed women to have failed to conceive after at least a year of trying. The same study, published in 2001, found that DES daughters' infertility problems were mainly a result of uterine and tubal problems.

Activists complain that despite such findings, infertility specialists, like most OB-GYNs, neglect to ask patients whether their mother took DES while pregnant.

That information can make a big difference in treatment, says Boston University epidemiologist Julie Palmer, lead author of the aforementioned study. ''When I get calls from women about this, I always recommend that they find a physician who's really familiar with DES,'' Palmer says.

One of the great ironies of DES is that doctors prescribed it to help patients avoid miscarriages and deliver bigger, stronger babies. Yet there was never any solid evidence to support its effectiveness.

Michael Freilick's mother took DES while pregnant with him, but he was six weeks premature and weighed only 4 pounds. Freilick had never heard of DES until he was diagnosed with testicular cancer at age 30. Up to then, he says, his mother ''just didn't think there was a need to tell me.''

Scientists may never know whether DES is linked to testicular cancer. ''It certainly has not been demonstrated that it is related to testicular cancer risk, but it hasn't been ruled out,'' Hoover says. ''The dilemma there is, we may not get more information on that by continuing to follow men up.''

The reason: Unlike most malignancies that strike in adulthood, the risk of testicular cancer peaks in the 20s and then drops steeply in the 30s, Hoover says. So DES sons are past the age when they're most likely to develop the disease.

Trusting in science

Freilick, a salesman in Cherry Hill, N.J., understands this, but he still has no doubts that the DES his mother took led to his testicular cancer. Now 49, Freilick was just diagnosed with bladder cancer, unusual in a non-smoker like himself but not thought to be linked to DES exposure. And he wonders whether scientists will see an increased risk of prostate cancer in DES sons now that they are aging.

DES' popularity soared along with the post-World War II baby boom. In a 1949 New England Journal of Medicine article, two Harvard Medical School OB-GYNs extolled the drug's use in preventing miscarriages.

Just four years later, William Dieckmann of the University of Chicago published contrary findings in the American Journal of Obstetrics & Gynecology.

Dieckmann compared 800 women who had taken DES while pregnant with 800 who took a placebo. The DES group had just as many miscarriages and preemies as the placebo group. In other words, the drug didn't work. (A later analysis of his work found that women on DES actually were less likely to deliver a full-term baby than those on the placebo.)

No matter. Thanks to aggressive marketing, the drug was more popular than ever. U.S. doctors prescribed DES to an estimated 5 million pregnant women.

Pat Cody, 79, took DES while pregnant with her first daughter, born in 1956. Cody, founder of DES Action, says she and her husband willingly paid $30 a month for the drug. At the time, Cody says, they were paying only $75 a month to rent their cottage in Palo Alto, Calif.

Her younger daughter, Nora, 41, was lucky. Cody switched OB-GYNs, and her new doctor was not one of the DES faithful.

Cody's firstborn had an ectopic pregnancy, in which the embryo lodged in a fallopian tube. She then developed severe endometriosis, leading to a hysterectomy at age 34. Nora Cody says her family believes that her sister's reproductive problems were all linked to DES.

''Those were the days of miracle drugs, penicillin and the whole broad spectrum of antibiotics,'' Pat Cody says. DES ''fit the pattern. We were very ready to accept it, believe me, and nobody ever thought about long-term effects."]]> CDC Launches New Comprehensive Information Resource About Exposure to Diethylstilbestrol (DES) http://www.yourlawyer.com/articles/read/5003 Tue, 04 Mar 2003 00:00:00 -0800 http://www.yourlawyer.com/articles/read/5003
In the United States, an estimated five to 10 million people were exposed to DES, between 1938 and 1971. DES is a synthetic estrogen that was prescribed to prevent miscarriages or premature delivery. However, in 1971, the Food and Drug Administration (FDA) issued a Drug Bulletin advising physicians to stop prescribing DES to pregnant women. The FDA warning was based on a study published in 1971 in the New England Journal of Medicine linking DES to a rare vaginal cancer in girls and young women exposed to DES in the womb.

Subsequent research links DES exposure to health risks among the women who were prescribed DES while pregnant and the children born to these women. Women who were prescribed DES while pregnant are at a modestly increased risk for breast cancer. Women exposed to DES in the womb-DES Daughters experience lifelong, increased risks that include a rare vaginal and cervical cancer, reproductive complications, and infertility. Men exposed to DES--DES Sons--face an increased risk for noncancerous epididymal cysts (growths on the testicles).

Researchers have been studying the health effects of DES for more than 30 years, said Marsha Vanderford, PhD, deputy director of the Office of Communication at CDCs National Center for Environmental Health. CDCs DES Update Web site helps people who think they may have been exposed to DES learn more about health risks related to DES and provides resources for protecting their health. ]]> Pregnancy Drug Linked To Cancer http://www.yourlawyer.com/articles/read/2143 Mon, 30 Sep 2002 00:00:00 -0700 http://www.yourlawyer.com/articles/read/2143 The drug, diethylstilbestrol (DES), was given to women between the 1940s and 1970s to cut the risk of miscarriage.

The drug, a synthetic form of the female hormone oestrogen, was withdrawn for this purpose in 1975 when dangers to both mothers and children became apparent.

However, it is estimated that many thousands of women took the drug - and there is no proper record of who took it.

It has already been linked to rare cancers such as vaginal cancer in younger women, but the new evidence about breast cancer will be a further worry.

Age-related

Research to be published in an American journal this week suggests that daughters over 40 were at greatest risk.

Experts from the US National Cancer Institute looked at 5,000 women known to have been exposed to the drug in the womb, comparing their medical histories with a similar number of women who were not exposed.

Overall, the DES daughters had an increased breast cancer risk of 40%.

However, among those over the age of 40, the increased risk was 250%, although this calculation may change as more exposed women reach this age group.

The study will be published in the journal Cancer Causes and Control.

The group DES Action UK, which has long campaigned for more action to reassure women who may have been exposed, is calling for a national register of DES-exposed women so they could be offered extra screening.

It believes that as many as 100,000 DES daughters could be involved.

New fears

Heather Justice, from the group, told BBC News Online: "Women who are worried about this need to ask their mothers - if they can - whether they took anything either during pregnancy or just before.

"If they did, they should arrange to see their GP and ask for breast screening."

Heather herself survived vaginal cancer at the age of 25, which she blames on DES, and is now concerned that breast cancer is also a risk.

"Obviously I'm fine at the moment, but this is a new worry."

DES has been linked not only to extra cancers, but also to reproductive problems, in both men and women of mothers who took the drug. ]]> Court Rules Drug Maker Liable For Cancer In Two Women http://www.yourlawyer.com/articles/read/690 Fri, 24 May 2002 00:00:00 -0700 http://www.yourlawyer.com/articles/read/690
In the ruling, the first of its kind in France, the court in the Paris suburb of Nanterre ordered the company to pay 15,244 euros (dlrs 14,042) to each woman. The court also said an outside expert has up to four months to determine what other penalties to impose.

Distilbene, the commercial name for the synthetic hormone diethylstilbestrol, was primarily used from the late 1940s until the mid-1970s to help prevent miscarriages. But in 1971, scientific studies linked the drug to cancer.

Following those studies, the drug, known as DES in the United States, was banned for use by pregnant women by the U.S. Food and Drug Administration.

In France, it continued to be prescribed as a treatment for pregnant women until 1977. Today, it is prescribed in France only for the treatment of prostate cancer— its initially intended use.

UCB Pharma, in a statement, said it had "taken note" of the ruling and said it would examine the decision. It did not say whether it would appeal.

The company denied any causal link between the treatment and the illnesses, however, and said such problems potentially concerned only a very small number of people.

The plaintiffs, Nathalie Bobet, 33, and Ingrid Criou, 28, were delighted at the verdict, their lawyer said.

"My clients are living this decision as a victory," attorney Martine Verdier told The Associated Press.

DES-France, an association uniting people who believe they are victims of the drug, estimates that about 160,000 people were exposed to the drug while their mothers were pregnant.]]> DES Diethylstilbestrol Daughter Breast Cancer Side Effects Attorney http://www.yourlawyer.com/topics/overview/des Fri, 24 May 2002 00:00:00 -0700 http://www.yourlawyer.com/topics/overview/des DOWNLOAD OUR DES INFORMATION PACKAGE

Injured by DES (Diethylstilbestrol)?

DES (Diethylstilbestrol) is a synthetic form of estrogen that was prescribed between 1938 and 1971 to help women with certain complications of pregnancy. DES has been linked to clear cell adenocarcinoma, an uncommon cancer of the vagina or cervix, in daughters of women who used DES during pregnancy. A study published in August 2006 found that women whose mothers took DES during pregnancy have almost double the risk of breast cancer. DES sons are at increased risk of epididymal cysts.  Children and grandchildren of women who took DES (Diethylstilbestrol) during pregnancy are at an increased risk of developing significant injuries ranging from rare cancers to genital abnormalities. Parker & Waichman, LLP represents daughters, granddaughters, sons and grandsons who have suffered from side effects of DES.

Clear Cell Adenocarcinoma
All DES daughters (women whose mothers took DES while pregnant with them) have a risk of about 1 in 1,000 for a rare cancer of the vagina or cervix called clear cell adenocarcinoma. If you or someone you know has been diagnosed with clear cell adenocarcinoma, we urge you to contact the DES Cancer Network. This cancer is practically non-existent in non-exposed women in this age group. Because of this risk DES daughters need a special exam at least once a year. DES Daughters have an increased risk for infertility. Infertility treatments for DES daughters are, in general, not different from those for other women. DES daughters may want to see a doctor experienced in treating DES-exposed women.

Pregnancy Complications
DES Daughters have a higher risk for ectopic pregnancy, miscarriage, and preterm labor and delivery. Most DES daughters can become pregnant and carry their babies to term. However, because of the above risks, all DES daughters (whether they have had previous normal pregnancies or not) require high-risk obstetric care and early confirmation of pregnancy. DES daughters should have their pregnancies confirmed by a health care provider as soon as pregnancy is suspected, and should be seen more frequently throughout their pregnancies.

Reproductive Organ Problems
DES daughters have an increased incidence of structural changes in their reproductive organs. These may or may not be linked to pregnancy problems, and are not known to be linked to cancer.

DES Sons & Grandsons
Although less is known about the consequences of DES exposure in men than in women, a number of concerns have been identified. It is important for men who know or suspect they are DES sons to be aware of possible problems and know what to do about them.  Most men exposed to DES before birth have no known increased risk of health problems. However, some DES sons do face an increased risk for problems with their genital organs. These range from harmless irregularities to problems that may require medical treatment. Many people, including some doctors, do not know that men can be affected by DES exposure before birth.
  • Epididymal cysts are the most common abnormality in DES sons. The epididymis is a structure on the back of each testicle where sperm are stored. Epididymal cysts are non-cancerous growths that feel like small lumps. They may disappear and recur over time. They do not need to be treated unless they are painful. However, report all lumps to your doctor and perform testicular self-exams on a monthly basis. Testicular problems in some men exposed to DES include both small testicles and undescended testicles. Both of these abnormalities are visible at birth. Men with undescended testicles have an increased chance of developing testicular cancer, even if their mothers didn't take DES. An abnormally small penis (microphallus) occurs more often in DES sons than in other men.
  • Some studies have indicated that testicular varicoceles occur more often in DES sons than in other men. A varicocele is an irregularly swollen or varicose vein on the testicle. This enlarged vein produces a higher temperature than is normal for testicles, and over a period of years can lower the number of normal sperm as a result. Hypospadias is a condition where the opening of the penis is located on the under-surface of the penis rather than at the end.
  • A 1995 study comparing a group of men exposed to DES to a group of men not exposed to DES found that DES had no effect on fertility. The men in this study were all born between 1950 and 1953. The study measured the following factors as indicators of fertility: whether the men had ever impregnated a woman, age at the birth of their first child, average number of children, medical diagnosis of a fertility problem, or length of time to conception in the most recent pregnancy of the female partner. There was no semen analysis done in this study, and thus we do not know whether DES sons have, on average, lower sperm counts. This study indicates that DES does not seem to affect fertility in males.
  • Another study finds that grandsons of women who took the drug diethylstilbestrol, or DES, during pregnancy may be more likely to develop an abnormality of the penis.
Legal Help for DES Victims
If your mother or grandmother took DES (Diethylstilbestrol) during pregnancy, please fill out the form at the right for a free case evaluation by a qualified drug side effects attorney. ]]>