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In 2019, I had a complete hysterectomy when I was diagnosed with stage 1A adenocarcinoma. Because of the low grade, there was no chemo/radiation prescribed as follow up. In late 2020, during a check up, a lesion was discovered in my vagina. It was found to be a state 1 clear cell cancer. I was unable to find whether my mother took DES during her pregnancy with me. (I was born in 1952). I had 30 treatments of radiation therapy followed by 3 brachytherapy sessions. I have been cancer free for 5 years though I have ongoing radiation proctitis from the treatments. Because so little is known about the longevity of DES exposed daughters who contracted vaginal cancer and because it was a clear cell cancer - so not a spread of my previous cancer, but a new cancer - I continue to live with a cloud over my head. It’s interesting how close my story is to others. I would love to have ongoing discussions with others with similar diagnoses. Thanks!

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@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.