DES Expsoure and Increased Cancer Risk

Ezscriiibe · January 2010

I'm in my early-mid-fifties and am the daughter of a woman who was prescribed DES during her pregnancies during the 1950s.

I was just curious how many other women out there have also been exposed to DES during the years it was commonly prescribed to pregnant women.

It's a sort of synthetic estrogen that was prescribed to pregnant women as a matter of course during the 1950s through the late 1960s or so. It was as common as prescribing folic acid or iron supplements today and the belief was that it reduced the risk of miscarriages. Even if the woman was not at risk for miscarriages (like my mother), they still were likely prescribed DES during their pregnancies.

In the early 1970s the FDA discovered a link between DES and various reproductive abnormalities, not only in the women taking it, but to the unborn children they were carrying. Further studies have shown that even the granddaughters have a higher risk for various reproductive abnormalities.

Here is what one site says about it:

"More than 30 years of research have confirmed that health risks are associated with DES exposure. However, not all exposed persons will experience the following DES-related health problems.
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 an increased risk for clear cell adenocarcinoma (CCA) of the vagina and cervix, reproductive tract structural differences, pregnancy complications, and infertility. Although DES Daughters appear to be at highest risk for clear cell cancer in their teens and early 20s, cases have been reported in DES Daughters in their 30s and 40s (Hatch, 1998)."

I was diagnosed with both uterine and ovarian cancer in my late 20s. My sister, born about 18 months after me, has had horrible problems with breast cysts as well as fallopian tube problems all her life. She was lucky to have her one son. I was lucky to have my one daughter.

My mother ended up giving birth to 6 children, 3 boys and 3 girls, but stopped taking the DES during pregnancy after my sister was born. My sister, me, and my older brother are the only three children who have exposure to the DES. We are the 3 oldest.

Speaking of my daughter, she, too, has had breast cysts and uterine abnormalities. She was diagnosed with CCA a year and a half ago just one year older than I was when I was diagnosed with my uterine cancer. She, fortunately, has 3 sons, so is not at all missing the organ!

My mother was diagnosed with and treated for breast cancer about 3 years ago. She's doing fine. Now, her mother also had breast cancer, so there's something to be said for that.

Still, though. I'm well aware of all the problems DES exposure presents and was curious how many women in this age range might have been exposed to DES in the womb as I and my sister were.

FLtricia · January 2010

My mother took DES in 1957 in the form of shots, then in 1960. I read elsewhere on this site some time ago that they were giving women DES in the 40's, too. And sometimes the women didn't even know. Not many asked doctors questions back then.

My mother was diagnosed with breast cancer at age 71, the first one in our family. My sister has had to have a hysterectomy, and is on watch for breast cancer. She was born in 1957. My brother, the 1960 birth, has had no problems at all.

I now question if there could have been residual excess estrogen in my mother's system because another sister was born in 1963, as far as my mother knows no DES. But, this sister was unable to have children.

I was born in 1949, and no DES that we know of. But my suspicion is that I was on birth control pills for 10 years that were very strong. When I moved and found a new doctor, he asked why I was on such a strong pill. There was no reason that I know of.

All of the above could be coincidence, but my gut tells me there is something to it. By the way, my mother is a 13 year survivor, and I just passed 3 years from diagnosis.

Every time I take my medication for 100% ER positive BC, I wonder if something will turn up down the road with health problems related to these meds.

biscuit · January 2010

My mother took DES in 1957 while pregnant with me. She had breast cancer at age 36, had a unilateral mx, no reconstrcution and is still going strong at 77. I just completed a unilateral mx (with reconstruction) at age 52. We were both negative for BRAC gene. I did have atypical cervical cells in my 20's which resolved - and I have two healthy teenage daughters - pregnancies no problem. I hadn't thought about the DES connection for breast cancer. My sister who is 48, is fine so far and was not a DES daughter. Who knows?

cookiegal · January 2010

Me too!

leaf · January 2010

The results of this study were that the results were not stastically significant, but there were excess breast cancers, raising the concern for further investigation.

According to wikipedia, rate ratio is Rate Ratio = Incidence Rate 1/Incidence Rate 2, or in this case the incidence of breast cancer in the DES population / the incidence in the non-exposed population. Note the huge confidence intervals, which indicate a LOT of uncertainty.

The rate ratio for incidence of invasive breast cancer in exposed versus unexposed women was 1.4 (95% confidence interval (CI) = 0.7-2.6). DES exposure was not associated with an increased risk of breast cancer in women under 40 years, but among women aged 40 and older the rate ratio was 2.5 (95% CI = 1.0-6.3). The rate ratio for the association of DES exposure with estrogen receptor-positive tumors was 1.9 (95% CI = 0.8-4.5). INTERPRETATION: While not statistically significant, the overall 40% excess risk, arising exclusively from the subset of estrogen receptor-positive cases, raises a concern calling for continued investigation. http://www.ncbi.nlm.nih.gov/pubmed/12420954

It must be very hard psychologically going through this.

cbm · January 2010

My mom took DES with all 6 kids, we believe. My brother has lost a kidney to cancer, sister had endometrial, and I had IDC/ILC--all of us over 50 when diagnosed. However, we also believe there is Lynch syndrome on my dad's side of the family, so hard to know how all of this works. We lost my mom to breast cancer on her 60th birthday in 1987, after a 17year fight; she was the first casualty.

I guess the thing that disturbs me the most about DES is the complete absence of accountability on the part of the manufacturer and distributor. As the result of DES exposure I couldn't have children, so it changed my life in a lot of ways. Interestingly, my gynecologist was also DES exposed, but prescribed birth control pills during my perimenopause, saying essentially that I had already dodged the bullet and that the only known and proven effect was a very small number of endometrial cancer in very young women. I believe to this day that a lot of gynecologists get their continuiing education from pharma reps.

Cathy

cookiegal · January 2010

I spent my early 20's worried about other cancers from DES, gosh I thought I was clear when I hit 25.

Argh!

diana50 · January 2010

i am a DES baby also, my mother only took it when pregnant with me in 1952. i was also on hormone replacement therapy when dx with BC in 2002. my breast cancer was 100 percent estrogen fueled and very aggressive. small tumor but 10 postive nodes.

Ezscriiibe · January 2010

Wow! I had no idea that I would connect with this many who may have been exposed to DES!

Over the years since my initial bout with cancer, I have found no one, not ONE person, who has even HEARD of DES, much less may have been exposed to it!

I usually have to go into the entire background about it.

I know there is no way for any of us to be able to confirm that we would or would not have developed our various cancers had we not been exposed to this particular medication, but I was curious as to how many in this group might have been exposed.

It's anecdotal information, for sure, but interesting to me nonetheless!

PS: I apologize for not responding to your posts earlier, but there's apparently a restriction on posts a new person can make in any one 24-hour period.

I was not aware of that or might have "spent" my post allotment more wisely!

Smile

yellowfarmhouse · January 2010

HI. I had endometriosis problems for many years leading up to a hysterectomy at age 38. My surgeon asked me if I knew if my mom had taken DES because he said the shape of my uterus suggested it. I had lots of trouble getting pregnant but I do have 4 bio kids. Anyhow... fast forward 2 short years later, ( after partial hysterectomy) I found two breast lumps. Actually whole breast was full of IDC and DCIS. So had bilateral mast, chemo , rads.

I haven't really had the courage to ask my mom more about it as don't want her to feel that something she took may have caused a problem. But, anyhow, I'm going to have my 4 daughters watched and checked like crazy! Thanks for posting!

Wendy

IronJawedBCAngel · January 2010

My mom took DES when she was pregnant with me. I seemed to avoid the gynecological issues, but it was something I was very aware of and made choices accordingly. I never took birth control pills because of the DES exposure, but I still ended up being diagnosed with breast cancer. I have not found a source that lists DES exposure as a definite risk factor for breast cancer, it lists it as being studied but undetermined, but it certainly makes you wonder. I had no family history and basically no other risk factors, but was diagnosed at the age of 47. However, my mom, has never had an abnormal mammogram. Just things that make you go hmmm.

leaf · January 2010

I know this is a big extrapolation, but in this study,

A project, designed to locate the population at risk to diethylstilbestrol (DES) exposure in utero in the greater Philadelphia area from 1950-1970, was implemented by contacting area physicians who might have used the drug in their practices on pregnant women. 216 (31.8%) physicians responded to the questionaire; 155 (71.8%) responded that they had used DES.http://www.ncbi.nlm.nih.gov/pubmed/463989

I don't know if these 71.8% of physicians used DES on ALL of their patients, but it sounds a lot of people could dave been exposed.

This 1976 paper opined

Few drugstores have records today of the prescriptions which they filled 20 years ago. It has been estimated that over the 1950-1970 period more than 200 different companies manufactured or "tabletized" under their own name DES plus a variety of similar synthetic estrogens promoted for the prevention of threatened abortion. A further hurdle caused by the passage of time is that even the records of the physicians are frequently lost. A final problem created by the age of the cases is statute of limitations. If the actual manufacturer of the DES cannot be identified, this is generally the end of the lawyer's interest in the case. http://www.ncbi.nlm.nih.gov/pubmed/1028312

Since cancer in general, and breast cancer in particular, is a very common condition among women, and if many people were exposed to DES, its going to be hard to do the studies and statistics.

diana50 · January 2010

Leaf

thanks for the info. i wonder about male children who were exposed to DES and if that affected their chances of BC.

my mom lost fetus after fetus so often that there were 7 years between me and my older brother. she explained to me that if it wasn't for the DES she doesn't believe she would have been able to carry me full term. interesting, she had no problem with my little brother and sister.

i am glad i am here and if the DES is a statistical risk factor for BC...well, i am sorry. but for me i am glad to have been born. lol i was 49 when dx with BC.

great thread* thanks

Ezscriiibe · January 2010

You're welcome, Diana.

I think I would have the same feeling about it as you, Diana, given your mom's history.

DES was not given to my mom because she had any risk factors or previous miscarraiges. In fact, it was pretty much to all the pregnant women in her area as a matter of course. The women didn't need to be at any risk whatsoever for miscarriage. It was just something the doctors added to the list of various things they required of their OB patients.

And, unfortunately, many women during that time never ever questioned their doctors. My mother thought it was a vitamin type of thing and did not even have any idea what it was really for.

But, that's not really why I started the thread. I was just curious, anecdotally, what the incidence of DES exposure might be for some of us.

Thanks so much, everyone, for sharing your stories.

NativeMainer · January 2010

I may be a DES Daughter--my mom had miscarriages before conceiving me, and was taking DES to prevent miscarriage very shortly before she got pregnant with me, We;re not really sure if she was still actually taking it when I was conceived, or if she had just stopped. I have cystic ovary syndrome, had breast lump (atypical hyperplasia) in my 20's, bc at 48. Personally, I think the DES had an influence, but the strong family history of stomach and pancratic cancer also factors in, I'm sure.

DES Expsoure and Increased Cancer Risk

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