Has anyone been exposed to diethylstilbestrol (D.E.S) in utero?

Hello @marys1956 and welcome to Mayo Connect. As I am a DES daughter as well your question interests me. While I've never experienced gynecological cancer, I've had a rare form of cancer of the upper digestive tract. I would like to invite one of Connects mentors, @naturegirl5, to this discussion as she may have more information about this.

Did you develop gynecological cancer as a young woman or as an older adult? Did you experience any fertility problems?

@marys1956. As far as I know my mother was not prescribed DES in the 1950's. I've had uterine cancer - endometrial - and had a hysterectomy in 2019 and a local recurrence in 2021. No one has ever asked me if my mother was prescribed DES when I was in utero. Now that you've posted it occurs to me that this question should be asked of our generation.

At first glance I don't have more information but I will do some digging.

When were you diagnosed with cancer and what has been your experience? Did you have fertility problems? Are you in contact elsewhere with other women whose mothers were prescribed DES?

I would like to know what DES stands for.. not familiar and curious.

Hello @rose53,

Good question! D.E.S. was a hormone treatment that was given to pregnant women who were at high risk for a miscarriage, premature labor, etc. Here is a link to an article about DES from the website of National Cancer Institute website, https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet.

It's use was ended in 1971.

@rose53. Teresa @hopeful33250 gave a really good answer. DES stands for Diethylstilbestrol.

I remember when DES was in the news. It was very frightening.

A woman I used to work with in the late 70's told us (our group) that her mother was prescribed Diethylstilbestrol (DES). At the time she was about 25 years old which was about the same age as I was then. I remember how frightened she was about the possibility of cancer and infertility. I've lost track of her over the years and I wonder what happened. I'm hopeful that she got married and had the family she so wanted.

Thank you.

There is an advocacy group, called DES Action, which can provide more information about risks from DES exposure, http://www.desaction.org .
Mayo was one of the institutions that followed women exposed prenatally to DES, through the DES Follow-up Study, with funding from NIH's National Cancer Institute (NCI) for 27 years. Mayo is continuing the study but due to recent NCI budget cuts, will no longer be sending questionnaires to participants; instead, participants will be "passively followed" through state and national cancer registries and other resources. Another agency will be responsible for the passive follow-up activities.
I think this is a loss of important information. The CDC had an information campaign years ago, but it hasn't been updated.
I don't know if the Mayo study or other sites are enrolling new subjects. Kathleen Yost, PhD is listed as the Principal Investigator of the Mayo DES Follow-up Study.
The letter from Mayo reporting this change lists the web site with research to date: https://dceg.cancer.gov/research/what-we-study/des-study
I hope that helps.

I am a DES daughter as well. I am surprised, but grateful to connect with others who are DES daughters or even just aware of DES. I have never met anyone else who knew that their mother took the drug during pregnancy. In my case, it resulted in an extremely tipped cervix which made it more difficult during Pap smears. I also experienced infertility (but was blessed through adoption!). In 2020, I was diagnosed with Stage IVb endometrial carcinoma. My only sign of something wrong was a severe pain in the very low part of my right abdomen that came and went for several months. I had NO bleeding, which is typically one of the first signs of endometrial cancer. It was discovered that my cervix was completely closed, hence the reason for no bleeding. I had a complete hysterectomy. The cancer had metastasized to several places. I had six months of chemo. Everything was stable for about six months, then it started growing again. I then started immunotherapy (Keytruda), which I have been receiving for about eight months. So, for now, I am trying to learn how to live with cancer which is what led me to this online site. I live in a small town and there are not any group resources nearby. If anyone can point me to an online group for those living with stage IV cancer, I would appreciate it. Thanks in advance.

Inspire.com is an online patient website, with different communities for different issues. There is a community for uterine cancer, but I don't know how often people post.
There's another resource that isn't exactly on target, but could still be helpful. There's a site, uniteforher.org, which provides resources for patients diagnosed with breast or ovarian cancer within the last 18 months. But they have some resources that are available to everyone, such as cooking classes by dieticians online that emphasize a shift to plant-based eating. You could check it out.

Thanks for the suggestions. I'll check them out.