DES daughter Patricia Royall and her mother, the late Virginia Inness-Brown Conn
Since my post about the DES breast cancer trial that gets underway in Boston this week, I’ve been asked how you would know if you were exposed to DES.
DES, or diethylstilbestrol, is a synthetic estrogen that was prescribed to millions of pregnant women between 1938 and 1971 to prevent miscarriages and premature labor, and other complications. It was later found not only to be ineffective but also that it had harmful side effects.
Known DES health risks (courtesy CDC)
- Women prescribed DES while pregnant are at a modestly increased risk for breast cancer
- Women exposed to DES before birth (in the womb), known as DES daughters, are at increased risk for: Clear cell adenocarcinoma (CCA) of the vagina and cervix • Reproductive tract structural differences • Pregnancy complications • Infertility
- Men exposed to DES before birth (in the womb), known as DES sons, are at increased risk for non-cancerous epididymal cysts.
Since the 1970s, thousands of lawsuits have been filed as a result of the alleged link between DES and cervical and vaginal cancer, as well as fertility problems. Many of the cases were settled out of court. The case that is about to be heard in federal court in Boston is reportedly the first major suit that alleges a link between DES and breast cancer in DES daughters over the age of 40.
Finding out if you were exposed to DES
Unfortunately, many people have no idea that they were exposed to DES or that they are at risk of potential health issues. According to DES Action USA, because the drug was given to pregnant women so many years ago, even for individuals with DES-related health issues, it is often difficult to determine whether exposure actually occurred.
Medical records can be found in some of the following places:
- Physician
If the physician is still practicing you can request all medical records in writing. If he is no longer in practice or has passed away his records may have been transferred to another physician or you can call the health department in your county to find out who has the records. - Hospital
Write to the medical records department of the hospital where the birth took place. - Pharmacy
If you know what pharmacy was used you may be able to get records from them, however some pharmacists may not have records that old.
DES Action recommends sending self-addressed stamped envelopes, rather than making phone calls to obtain the necessary records.
Women may have taken other drugs during pregnancy and determining which might have contained DES is sometimes difficult. If DES is included it usually states DES or Stilbestrol. If you are unsure, contact DES Action USA at 1-800-DES-9288 or by email and someone will help you decide whether the drug did contain DES.
If you have difficulty obtaining your mother’s medical records inform the physician, hospital, or pharmacy that these are your birth records. Although the records are owned by the provider you have a right to see and copy those records.
If a military physician cared for the pregnancy you can call 1-800-827-1000 and request Standard Form 180 to get your records.
If the records cannot be located, but you have reason to believe that you may have been exposed to DES, your physician may want to follow the guidelines for DES exposure just to be on the safe side.
DES trial updates
If you would like to know what is happening with the DES breast cancer trial, DESInfo will be providing regular updates. Opening statements, which had been scheduled for Monday January 7, will now take place on TUESDAY, JANUARY 8 at 9 a.m. at the John Joseph Moakley U. S. Courthouse in Boston, MA.
Send me a comment if you have any questions, and I will do my best to find you the answers.
[…] http://www.dianeatwood.com/catchinghealth/2013/01/how-to-find-out-if-you-a-des-daughter/ […]
My twin sister Karlene, and I are DES babies born in 1947 in Boston. We are in still in a “Sister Study” Program trying to help research with others who might have difficulties and breast cancer. My twin has had breast cancer, and other fertility issues. Have you researched the “Sister Study” Program?
Dianne Horton
Dianne,
I have not researched the Sister Study, but would love to talk with you about it. If you agree, please send me an email: diane@dianeatwood.com.
Great article! Many women have no idea whether they were exposed to DES; I believe many health providers are not aware of the potential risks for exposed women, either. For instance, the new guidelines for reduced-frequency Pap smears should not apply to a DES daughter. Years ago, I worked on a study at the Yale School of Public Health which tracked a cohort of DES exposed people over time. We spent many dreary hours in cold basements and storage facilities extracting information from old prenatal records to assess how much DES each individual had probably been exposed to in utero. I was astonished at the amounts of medicines given to pregnant women in those days. DES was even added to prenatal vitamins! Happy to note that we have come a long way in our approach to pregnancy (though there’s certainly still more to do!) Thanks, Diane, for bringing this important and often-neglected topic to light.
Hi- I live on Long Island and I just finished treatment for Breast Cancer at age 49.. I am the first line in my family to have it…my siblings do not have it… I was born in 1968 but my mother almost miscarried me in the third month of pregnancy. I think she was given DES… how can I go about trying to find out if I was exposed to it… I also had pre-Cancerous cells removed from my cervix about 15 years ago and I am always watched with the HPV virus. Not sure where to start. If someone could help… Thanks
Cathy, I think the only way to know is if you can find out for sure if your mother took it while she carried you. In the blog post I list several ways to try and track down her medical records if she is no longer living or unable to tell you. Have you had a conversation about it with your own doctor?
I have had a series of health issues, none of which could be explained with genetics, lifestyle, etc. I had a congenital hip dislocation – treated with an ORIF and an osteotomy during my first year of life. At age 28, I had an abnormal PAP, treated with colposcopy. I was treated for 5+ years for infertility, after my 2nd course of IVF, my physician advised that my ovaries had no viable eggs. My marriage ended soon after, in large part due to my inability to have a child. A total hip replacement followed at age 44. Diagnosis of breast cancer was next in 2006. Diagnosed in 2010 with Parkinson’s disease. (Misdiagnosed in 2004 – I have young onset PD). No family history of any of the above. Also have reproductive organ abnormalities.
I learned recently from my sister that my mom was prescribed a drug prior to and during her pregnancy with me. My symptoms strongly suggest that drug was DES. I’ve spoken to several law firms; was advised that the statute of limitations had expired, that in my birth state, I had to be able to prove which company made the drug I was exposed to; that most of my issues had nothing to do with DES. I’ve attempted to contact various researchers to be included in studies with no luck. I feel fortunate that my knowledge of the exposure explains much about my life and I am able to be followed with appropriate diligence by my gyn. Do you know of any current studies that are accepting information from DES daughters? Any resources? Any attorneys who might listen? Thanks much!
What about compensation for those that have a direct link to DES? I have CCA. Clear-cell add no carcinoma is a direct link to DES. All medical records have been destroyed and most are after 10 years. However, with all having already passed I have a step aunt that remembers my mother having terrible pregnancies. It was during that time she took shots to keep her from going into labor. Is there help or anything out there for us??