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Has anyone been exposed to diethylstilbestrol (D.E.S) in utero?
Gynecologic Cancers | Last Active: Jun 18 12:30pm | Replies (68)Comment receiving replies
@suzanne48864 Info from a DES Daughter about the DES Registry
https://voices.uchicago.edu/ccaregistry/contact/
"I am a DES daughter who had a CCA of the uterus when I was 60. I am now 72. I have just signed consent forms to participate in a research study with the University of Chicago and would like to encourage anyone in our DES community who has been diagnosed with any gynecological CCA to contact them and see if you are eligible to participate. You do not have to live in the Chicago area. There are no financial costs to you. I will be providing blood work and access to other related medical info. That is all. I have provided their contact info in a link. University of Chicago is the only place I could find that is doing this kind of research. Please join me and let's make something good happen from our exposure to DES and subsequent cancer"
You can also join the Facebook Page DES Tragedy DES Exposed Welcome which is a private page and DES Daughters do share on this page.
Replies to "@suzanne48864 Info from a DES Daughter about the DES Registry https://voices.uchicago.edu/ccaregistry/contact/ "I am a DES daughter..."
@kmfdallas
Thank you for sharing this. My mother told me that she took DES while pregnant with my older sibling but not for me, so I had no concerns. In 2022 I was diagnosed with clear cell endometrial cancer and I have recently learned that clear cell is often the type of cancer that DES daughters get. I had some other gyn issues prior to this, as have my two daughters. So I ponder if my mom misremembered or if there’s reason for children of subsequent pregnancies - as well as subsequent generations - to be at risk.
And then there’s the male children of DES moms…..
I will look into the U of Chicago study.
Best wishes to all of us on the anxiety-laden cancer journey.
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@kmfdallas Thank you so much for reaching out. It is so nice to hear you are doing so well. Even though intellectually I know I should relax at 5 years, I am still quite anxious. My doctor has me dilating ever 4-5 days to make it easier to do a visual examination at my once a year check up. This means “cancer” is never out of my mind. Every little symptom seems like it could be a “sign”. I’ll get in touch with University of Chicago. I live right across the lake in Michigan.