ER+ and had DES exposure in utero?

ddfair · February 2016

I have tried searching this topic on this board but got no results. I know I can't be the only DES daughter on this site. It would seem logical that in utero exposure to synthetic estrogen would put us at higher risk for estrogen driven cancer. Anyone know of any studies?

De

doxie · February 2016

I researched this several years ago and there is a study that determined DES put women at a much higher risk for BC, mothers but more so their daughters. It didn't find that the % ER+ or ER- was different from the control group.

DES daughters make sure that when you get your PAP smear that your vagina is also swabbed in a separate sample. You are still in danger of clear cell carcinoma.

My mom thinks she received DES during her pregnancy, but didn't chase down the records when this hit the press in the early '70s. The doctor skipped town years before running from a bad reputation. So I may or may not be a DES daughter. I'm the only one with BC in the two generations of women in my family most likely to now be diagnosed.

There is a great DES organization with a very helpful website. I'll look for it once I get off my phone and to better internet access.

www.desaction.org is the site.

mollyboo · March 2016

I'm certain that my mother also took DES when pregnant with me as well. I'm curious as to the types of breast cancer that could be linked back to exposure: ductal, lobular, etc. I do know that my taking HRT was probably the worst thing I could have done and when I tried to stop the hormone therapy, the NP insisted I stay on it "for my bones". I have great bones, but the first case of BC in my family ever. My oncologist felt I never should have been placed on HRT in the first place, but my OB/GYN felt my possible exposure to DES was not significant..... i should have trusted my gut.

ChiSandy · March 2016

My mom had a tough time conceiving and said that in 1950 early in her pregnancy with me she was given something to prevent miscarriage. She didn't remember the name of the drug, but ever since the DES issue hit the news in 1972 she worried, and went to her grave terrified that I would eventually suffer the consequences. (I miss her but I'm glad she never had to learn of my bc diagnosis). My kid sister was sort of a surprise--by the time she found out about that pregnancy, she was far enough along that there was no danger of miscarriage (at least none they knew of back then). There is no history of bc on either side of my family, and I tested BRCA neg. with no VUSes. But I'm pretty sure that what caused my ER+ bc was a combination of early menarche, late menopause, only one successful pregnancy (and after 30 at that), inability to breastfeed more than a few weeks, and high BMI after menopause. Had DES caused my cancer, it would probably have developed at a much younger age.

ddfair · March 2016

Kathy,

I did see a class action lawsuit serveral years ago for DES daughters who developed invasive breast cancers. It was a full page ad in the Seattle Times. Apparently there is enough evidence that DES exposure means a higher rate of breast cancer. I called the law offices to inquire about DCIS. They said so far there wasn't enough evidence to show higher rate, therefore DCIS was not included in the lawsuit.

I was really surprised you were given HRT. I had a doctor recommend it to me too post menopause. I had to remind him about my DES exposure and all the problems it caused me. Hormones have not been kind to me.

De

EllenP · March 2016

Here's a link to a 2011 press release from the National Institutes of Health, titled "Women exposed to DES in the womb face increased cancer risk".

http://www.nih.gov/news-events/news-releases/women...

More info from the National Cancer Institute:

http://www.cancernet.nci.nih.gov/about-cancer/caus...

My mother took DES while pregnant with me. She developed breast cancer five years ago at age 78. I was diagnosed with breast cancer the following month, at age 55.

besa · March 2016

I think the New England Journal Article below (first link) was the last big study to come out on DES Daughters. My general take on things after researching this (and if anyone has additional references with different info please post) is that, though DES daughters over 40 years of age have a higher rate of bc, there is no special type of breast cancer currently know to be associated with being a DES daughter. The New England Journal Study ran until age 55 so what happens to the bc statistics of DES daughters after that age has not been published.

Based on animal studies there is a possibility that DES daughters may have an increased number of terminal buds in their breast tissue. This may mean that there may be an increased amount of "high risk" tissue in human DES daughters where bc can occur. (This is just one theory proposed.)

(look at figure 2, graph "I" in the New England Journal Article in the link directly below to see how bc risk in DES daughter increases with age)

http://www.nejm.org/doi/full/10.1056/NEJMoa1013961...

http://www.ncbi.nlm.nih.gov/pubmed/21658437

(below is an older article)

http://cebp.aacrjournals.org/content/15/8/1509.lon...

Edited this post to add a more recent article (March 2016)about DES daughters and clear-cell adenocarcinoms, see link below.

https://www.ncbi.nlm.nih.gov/pubmed/26979629

ddfair · March 2016

Hi Besa,

Thanks for all the information and the links. Enjoyed the little lite reading LOL. I did learn a lot.Very interesting stuff.

De

o

ChiSandy · March 2016

Whoa. I not only got IDC, but also had a documented spontaneous abortion (blighted ovum) of my first pregnancy, a spontaneous abortion (also blighted ovum) of the fraternal twin of the son I delivered successfully in my second pregnancy, and delivered my son a month preterm. I also had several very late periods in the three years after my son was born (the last one beginning on day 37 of my cycle) until we gave up trying to have a second child. My sister also suffered a spontaneous abortion of her first pregnancy, tried for several years after that and eventually gave birth at 42 to her daughter--three weeks preterm. I'm glad the NEJM article came out years after my mom's death so she didn't have confirmation that the guilt that tortured her might have been valid. Of course, had she not had that drug to prevent miscarrying me, I wouldn't be here typing this......nor anywhere, for that matter.

ddfair · March 2016

Sandy,

Although DES was given to pregnant women to prevent miscarriage, science has shown it did nothing to prevent it. So you would still be here even if your mom had not taken it. The irony is that the daughters of DES have a much higher rate of pregnancy loss and trouble conceiving. I suffered 5 consecutive miscarriages before finally having a child. The medical term for someone like me is "habitual aborter" doesn't that sound gruesome? Not a title I ever wanted.

De

april485 · March 2016

I am very sure that I am a daughter of someone who was given DES during pregnancy. I was born in 1955. My Mom was having bleeding during her second trimester and the doctor gave her "hormone pills" to help her carry to term she said. She did not know what they were called. Her doctor is long dead and no one took over his practice. No records can be found and I tried because I was so baffled as to why I was taking so long to become pregnant when I was a young married woman and I read something about DES daughters and began questioning my Mom about her pregnancy with me. My mom has passed 4 years ago.

Me - diagnosed with Stage 0 cervical cancer at 23 and my husband who I met at 18 was only my second sexual partner so no mulitples and since stage 0, can be called "epithelial changes" according to things I have read. Have not had any bad pap smears since colposcopy performed and wide conization surgery . Two miscarriages, one before the diagnosis of cervical cancer (11 weeks pregnant) and one after (7 or 8 weeks)

My mom had no gynecological issues that we know of.

I was diagnosed with DCIS in 2013 - grade 2/3 ( at 57 but have had call backs for years and two needle biopsies) I never get my vagina checked in addition to my cervix in my yearly pap smear. I guess I will be telling my gyno that she should likely do that just in case but it appears from these articles that younger women tend to develop the clear cell adenocarcinoma rather than someone in my age cohort.

Scarlett152 · March 2016

I am also a DES daughter. I was at the end of the range that they prescribed it (1966). I was diagnosed with IDC at 47. I had 2 full term pregnancies and no miscarriages. Hard to know the impact of DES, but my gut is that it had to play a roll since I have no family history of BC and 14 female cousins and one sister! I'm the 3rd youngest of the cousins, so other BC's should have popped up already. Sometimes I like to blame DES when I'm not feeling motivated to follow the guidelines regarding food, weight and exercise for survivors, arguing that I was relatively healthy before diagnosis so it must have been the DES. However, the bottom line is we will never know. I do know I'm BRCA negative so it's not that! I'd be interested in any literature on DES and BC. I've never mentioned the link to my mother because I feel like the evidence is limited and it would just make her feel bad. My husband has always said that if the DES allowed her to carry full term with me after 7 miscarriages, then I should be glad that she took it. Although ddfair's comments may make me rethink that logic.

Jelson · March 2016

Here is a webpage specifically for DES daughters - the website/organization is called DES Action USA. It contains links to the most current research. http://www.desaction.org/des-daughters/

april485 · March 2016

http://www.desaction.org/des-daughters/ Thanks Jelson. Made it clickable for easier access.

fleur-de-lis · October 2016

bumping this thread back up, as several of us who have lobular neoplasms notice that there is research that suggests that HRT is a known cause. Although birth control pills ( perhaps certain indexes of BC?) and DES exposure has also been implicated in invasive breast cancer.

The conversation was brought back up RE: DES and ILC on the current thread discussing the Pittsburg, PA. ILC conference.

Only thing I will add regarding my situation at this time is,

Yes, I am a DES daughter

Fertility issues, never conceived. No birth control pills, no fertility drugs and no HRT. Same for my sister.

Actually, low estrogen problems for most of my child bearing years. In my early 30's I was lucky to have a E level of 80, when the normal levels for that time in the menstrual cycle should have been around 200. In menopause, I have had total estrogen levels ( blood SERM, no salvia BS) of between a whopping high of 15 to a low of 3) I know women on aAI who cannot get their E levels to a 3.

Always had, ah...really good testerosterone levels....ahm...it made me a bit of a "randy girl" in my youth. Good for sports, too😜 Biological impetus of behavior

"Strange" breast growths and tumors, ALH, two Phyllodes and a Hemioanginoma. Currently awaiting path report RE: LCIS, or OMG ILC! Uterus is "strangely shaped" and tipped, although not the Typical DES uterus.

teachermom4 · October 2016

DES daughter as well. Two miscarriages, infertility and finally delivered twins 9 weeks prematurely. Took pergonal during my infertility and I'm sure that didn't help either. My MO said there wasn't much research being done on a link with DES since it's "essentially over." I've often wondered about the next generation though. Are granddaughters at risk

fleur-de-lis · October 2016

Teachermom, I know that they stopped using DES sometime in the late sixties to early seventies? My memory could be off here....just hoping that you and yours did not get exposed

PugsMama · April 2017

this is an old thread but I thought I'd chime in to say that my mother took DES. She was dx with bi-lateral BC at age 58, I was 57 when I was dxed.

jdstr · May 2017

I just learned about DES and that my mom took it during her pregnancy with me. She feels guilty that she may have "caused" this for me. I am 46, recently DX IDC, HR+, no family history of BC whatsoever... don't have all the other factors yet. But I also had miscarriage of first pregnancy, early labor of second, and my daughter had early onset menses. Very interesting to read about.

Bcky · May 2017

I am a DES daughter. My mother is clear about that.

santabarbarian · October 2018

I am a DES daughter. No fam BC history, no BRCA, breastfed 6 years total, fit, and developed TNBC after menopause. Apparently 2x the BC after menopause among DES exposed.

Has anyone figured out any endocrine/hormone actions to take to prevent recurrences? I have been advised that since I am not HR+, supplementing estradiol might be onco-protective for me.

I'd love to hear if anyone has found a doc who is very knowledgeable about DES?

PatTheArtist · November 2018

I am a DES daughter. First diagnosed with BC at age 50. My mother had BC at age 71. She is 88 and never had to deal with BC again. I am on my second BC.

I took Clomid to get pregnant with my son. Spent 13 weeks in the hospital with pre term labor. He was born at 34 weeks.

When I was 36 I had a hysterectomy due to bleeding, endometriosis, and fibroids. There was a growth on my left ovary that turned out to be pre cancerous. Both ovaries were removed.

In a couple of weeks I'll have a lumpectomy for the two tumors in my right breast. Last time it was my left breast.

I am glad I found this thread. Now I can research what all this means to my cancer. The doctor at Moffitt told me to not have a bilateral mastectomy at this time. He said I may have to do this in the future, but not now. Being a DES daughter with my history I feel that is wise advice.

ER+ and had DES exposure in utero?

Comments

Categories