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What are the chances I was exposed to DES?
If you were pregnant between 1938-1971 and took any medications for bleeding, miscarriage, premature birth or diabetes you may have been prescribed DES. If you were born during that time frame, ask your mother (or other relatives who might know her pregnancy history) about any medications she may have taken while pregnant with you.
How can I find out if my mother took DES while pregnant with me?
While there is no definitive medical test, you can visit the CDC's DES Update website at www.cdc.gov/DES and take the Self Assessment Guide. You can also call DES Action at 1-(800) DES-9288 for information about tracking down medical records.
What is my risk for cancer as a DES Daughter?
All DES Daughters (women whose mothers took DES while pregnant with them) have a lifelong risk for a rare cancer of the vagina or cervix called clear cell adenocarcinoma. This cancer is practically nonexistent in non-exposed women in this age group, and occurs in about 1 in 1,000 DES Daughters.
DES Daughters should have an annual special pelvic exam to detect this cancer. DES Action's website at www.desaction.org and the CDC's DES Update website at www.cdc.gov/DES have information about the exam for both patients and their doctors.
New research indicates that DES Daughters also run an increased risk for breast cancer, so DES Action urges annual mammograms and clinical breast exams, as well as monthly breast self-exams.
What is my cancer risk as a DES Mother?
Women who were prescribed DES while pregnant have an increased risk for breast cancer so DES Action advocates the same breast care as indicated above for DES Daughters.
What about DES Daughters in their reproductive years?
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 Daughters do have an increased risk for infertility and may want to see a doctor experienced in treating DES exposed women. DES Action has a free doctor referral list available by calling (800) DES-9288.
Most DES Daughters can become pregnant and carry their babies to term. However, they do have an increased chance for life-threatening ectopic (tubal) pregnancies, miscarriage and preterm labor and delivery. As a result, they require high-risk obstetric care (whether they have had previous normal pregnancies or not).
Should DES Daughters use hormone replacement therapy (HRT)?
Many women worry about using HRT and that is especially true for DES Daughters who have already been exposed to unnatural levels of estrogen. Given recent findings that HRT use carries greater risks than benefits, DES Action discourages its use for DES Daughters.
Does DES affect the children of DES Daughters and Sons?
Research is now underway into potential health impacts for these so-called DES Grandchildren. Recent studies show DES Granddaughters seem to start menstruation on time but some appear to achieve menstrual regularity later than unexposed young women. There are also hints at possible infertility problems for this group but more research is needed.
DES Grandsons may be at greater risk for Hypospadius, which is a birth deformity where the urethral opening of the penis is placed wrong, emerging somewhere down the penis shaft instead of at the tip. In many cases this can be corrected with surgery.
Animal studies indicate a higher rate of tumor growth in DES Grandchild mice but researchers caution that more studies are needed to determine if what happens in the laboratory also occurs in humans. At this point no overall cancer risk has been identified for DES Grandchildren, however, ovarian cancer may be a concern and that is being studied further.
Are there health affects for DES Sons?
DES exposure can also affect men. Some DES Sons (whose mothers took DES while pregnant with them) run a higher risk for one or more genital problems, including undescended or underdeveloped testicles, cysts on the back of the testes (on the epididymis) and lowered sperm count. DES Action is calling for more studies to determine whether DES Sons face an increased risk for cancer or other health problems.
Can DES affect the immune system?
Some studies have shown an increased incidence of autoimmune diseases (such as lupus, rheumatoid arthritis, and Graves Disease among others) among DES Daughters. It is quite possible DES affected the immune system as well as other bodily systems, and researchers are studying this question further. When results are in, they will be posted on the CDC's DES Update website at www.cdc.gov/DES and published in DES Action's newsletter, the DES Action Voice.
What about menopause and hormone replacement therapy?
No studies have clarified whether DES affects the menopausal experience itself. Recent revelations about the many risks associated with menopausal hormonal replacement therapy have strengthened DES Action's conviction that DES mothers and daughters should avoid HRT.
Do DES daughters have a higher risk for breast cancer?
From statements by Dr. Julie Palmer reporting on results of a National Cancer Institute survey of DES daughters:
"We found no association between DES exposure and risk of breast cancer before age 40. In fact, DES-exposed women had a slightly lower incidence of breast cancer, although the decrease was not statistically significant.
"The second analysis looked at experience at ages 40 and older, and in this analysis we did observe a positive association. DES-exposed women were estimated to have 2.5 times the risk of breast cancer as compared with non-exposed women of the same ages. This increase was statistically significant. Most of the women had not reached age 50 yet so this 2.5 times higher risk primarily refers to women aged 40 to 49
"Because the numbers are so small we still do not know whether or not prenatal DES exposure influences the risk of breast cancer in the daughters, and this is probably frustrating news for women who have been exposed.
"Fortunately, we have been able to continue follow up in the study, and we're now receiving back the latest questionnaires. These questionnaires cover four or five years since the last analysis, and most of the women in the study are not in their 40s or 50s, which is the age at which breast cancer becomes more common.
"We expect there to be an appreciable number of new breast cancer cases reported since the last questionnaire. Enough cases so that future analysis is likely to provide more definitive results, and in the future we may also be able to look within specific sub-groups of women. For example, examine what is the relation between DES exposure and risk of breast cancer among women who have a family history of breast cancer or among women who have never given birth or among women who have used hormone replacement therapy. These are obviously all questions of interest. Thus we hope to have more informed results for you in the next year or two."
I've heard that DES can affect the immune system. Is this true?
Some studies have shown an increased incidence of auto-immune diseases (such as lupus, rheumatoid arthritis, Graves disease) among DES daughters. It is quite possible that DES affected the immune system as well as other body systems, and researchers are studying this question further.
What about legal action? Can I obtain some compensation for my DES injuries?
There is not and has never been any class action suit. Many DES-exposed people (primarily daughters) have as individuals sued the drug companies who manufactured DES and have obtained compensation. Your ability to sue depends on many factors, including the statute of limitations and laws in your state and your own injuries. DES Action maintains a National Attorney Referral List of attorneys who handle DES-related cases.