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I'm Looking For Other BC Survivors Who Are Also DES Daughters. Diethylstilbesterol Was Given To Prevent Miscarriage Or Early Birth.

A MyBCTeam Member asked a question 💭
Chelmsford, MA

I know that many DES daughters developed vaginal cancers in their late teens and early twenties, had benign vaginal cellular changes and deformed uteri, and often had early deliveries (my two children were 6 weeks and 3 weeks early).

I'm wondering if my in-utero exposure to DES increased my risk of post-menopausal BC. If my BC is linked to the DES, then MY daughter's risk of developing BC should be no greater than that of the general population. Am I making any sense here...can you follow my… read more

September 1, 2012
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A MyBCTeam Member

Thanks to all the ladies that responded. I often think about that time and the huge denial that corporations made. No one talked about breast cancer. Many lost their jobs if and when the company "heads" learned an employee had breast cancer. It was considered an expensive death sentence. I had several friends who feared going to work each day and worried that someone would learn of their breast cancer. Some did loose their job. We have come a long way from 50 years ago - in some respect. Every one talks about short term breast cancer now BUT what about those of us long term? I still have an expensive long term death sentence... Let's talk about that....

October 7, 2022
A MyBCTeam Member

My grandmother took DES when she was pregnant with my mom because her first child was stillborn. My mom had several hallmark complications associated with DES daughters, including difficulty getting pregnant, second trimester miscarriage, giant paraovarian cysts requiring a hysterectomy, and breast cancer (inflammatory breast cancer, stage 3b) at age 50.

Because of her history, I got a mammogram this spring for the first time at 38. They discovered several areas of DCIS and an early stage ductal carcinoma.

We had no known family history of breast cancer. We have the same BRCA gene variant — but its significance isn’t known. DES can impact DNA that can be inherited, however. Honestly, DES granddaughters aren’t being studied enough. The scientific community assumes the problem is over, but DES granddaughters are only now entering the age groups where cancers are more likely to start cropping up.

August 21, 2023
A MyBCTeam Member

My mom took DES and I was directly affected by it. My son Ryan lived for 3 day’s. He was a direct li k too DES. Also my age, stage of my BC is a direct link to BC. I did genetic testing everything came back negative. My mom died of Bladder cancer but no genetic link. I was 52 and stage 2 HER2positive breast cancer, ER positive. My sister did some research and it gave me some closure. Now I can move forward and hope it doesn’t return.

October 6, 2022
A MyBCTeam Member

I am a DES granddaughter. My mom (deceased from BC) and one of her three sisters (a five year survivor now) both had breast cancer. I am the only one on the granddaughter level to have had any cancer thus far.

March 15, 2013
A MyBCTeam Member

Although I never had DES, I worked for the insurance company that represented plaintiffs who had DES "complications". The drug manufacturer really put the plaintiffs thru "hell" to prove up their cases. This was my first really big case out of college and I still have nightmares about it. I can't imagine the long term effects these ladies went thru. We know so much more today than 50 years ago. It is a long, slow process for women but we are inching forward... Hang tough...

February 16, 2022

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