DES linked to Breast Cancer

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2xSurvivor
2xSurvivor Member Posts: 15
edited June 2014 in Young With Breast Cancer
DES linked to Breast Cancer
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  • 2xSurvivor
    2xSurvivor Member Posts: 15
    edited November 2007
    Hello.  My name is Darcie.  I was diagnosed in 2001 with Infiltrating Ductal Carcinoma...at age 26.  My Oncologist linked my cancer to DES that my mother took while she was pregnant with me so she wouldn't miscarry.  I have no history (or none within the past 70 years) of Breast Cancer in either side of my family.  In April 2007, I had a re-occurence.  I was wondering if there is anyone else out there who are or know someone who is in the same situation?  I have researched DES and am fearful for my 3 1/2 year old son now.  Any comments, suggestions, inspirations are appreciated. Laughing
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  • snowyday
    snowyday Member Posts: 1,478
    edited November 2007

    That's interesting my mother had terrible nausea with me and my younger sister, I'm triple negative and my sister is having a biopsy tomorrow for a lump that looks suspicious.  I'm going to ask my mom about the DES as well and let you know.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Over the years on these boards, many of us DES daughters have discussed this. Here is the link to the current conversation over on the IDC forum:  http://community.breastcancer.org/topic/96/conversation/694880?page=1#idx_24

    It certainly seems to me that a rather significant number of us were exposed to DES in utero, but I don't know of any truly definitive studies that address the issue.

    ~Marin

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  • 2xSurvivor
    2xSurvivor Member Posts: 15
    edited November 2007

    FitChik~

    I am unable to bring up the link you suggested, but I am very interested in reading the info.  Could you send to my email address:  goldwillard@hotmail.com

    Thanks :)

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  • Mizsissy
    Mizsissy Member Posts: 371
    edited November 2007

    Hi Darcie,

    I am a DES daughter too.  I was born in 1948, when DES was first being used, and my mother, who always overdoes everything, said she took the pills by the handful.  I am surprised that you could be a DES daughter being as young as you are.

    From what I have read, there seems to be a definite link between estrogens--natural and synthetic (DES, HRT)--and breast cancer, but the exposure is direct...it comes from the pills and the estrogen your body produces.  You son would not be a DES child if you did not take DES...also, the fact that he's a boy means his body won't have a lot of exposure to estrogen. 

    From your dx, it looks as though the recurrence was local...very lucky!!!Did you have lumpectomies or mastectomies?

    Mizsissy 

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  • 2xSurvivor
    2xSurvivor Member Posts: 15
    edited December 2007

    Mizsissy~

    Thanks for your response.  My mother explained to me that she only took DES for about 3 months until they pulled it from the market.  Evidently, 3 months worth was all it took.  The research that I have done regarding DES is that the risks go for 2 generations and no matter what sex.  DES is common for links in Testocular (sp?) Cancer, this is why I am afraid for my son.  I could have the genetics test performed on him, but then I keep thinking "what kind of life will he lead if it is positive".  I know I will over protect and constantly worry on when will it happen.  So I have chosen that it is in Gods hands.

    I have had both lumpectomy, mastectomy, and lymph node removal.  I am currently recooperating from a TRAM Flap, which isn't going very well.  I have produced an infection and the doctor wants to go back in and do the Lattissimus Dorsi Flap.  I'm getting tired of being cut and poked on, by psychologically I need it done.

    Again thanks for your comments.

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  • veggievet
    veggievet Member Posts: 72
    edited December 2007

    Dear 2X survivor,

    Actually the best person to have the genetics evaluation would be you, not your son.  My very strong recommendation would be for you to at least speak with a genetic expert before deciding against genetic testing.  You can find a genetic expert through the website for the National Society of Genetic Counselors at: http://www.nsgc.org.

    Warm regards,

    Sue

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  • yellowrose
    yellowrose Member Posts: 886
    edited September 2010

    Re DES:  My mom doesn't know if she had it.  She knows that she was taking something during her pregnancy for her last three pregnancies.  The post above mentions testing.  Is there a test that can show exposure? 

    Also, what other implications are there other than infertility/pregnancy issues and the possibility of bc.  The fertility and pregnancy issues don't affect me anymore and I've already had bc.  Thanks for the info.

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  • 2xSurvivor
    2xSurvivor Member Posts: 15
    edited December 2007

    veggievet~

    Thanks for your comments.  I guess I still don't understand why I would need the genetics test since I have now been diagnosed twice.  I have full faith in God and no test is 100%.  I have decided to leave it all in Gods hands.  I have my life to worry about right now since my TRAM Flap has not taken completely and I have produced a severe infection.  Again, thanks for your comments.  They are all appreciated. 

    Love and Prayers,

    Darcie

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  • veggievet
    veggievet Member Posts: 72
    edited December 2007

    Hi Survivor,

    I'd be happy to discuss this off the boards if you'd like.  I'm not saying that you should have genetic testing, I'm just saying that before you decide not to that you should see and speak with an expert in cancer genetics and then you can make an informed decision once you have all the information.  A board-certified genetic counselor will not try to talk you into or out of testing but make sure that your decision is an informed one.

    The most significant reasons to know if you carry a mutation would be to better know your risk for ovarian cancer, and to help your relatives understand their risk better.

    Just to clarify, I am not a genetics expert but I do think just like it's important to speak with an oncologist when you are dealing with cancer, that you should speak with a genetics expert when determining if your cancer is hereditary.

    Just my 2-cents.  If you would like to chat later feel free to e-mail me at: sueanddan@att.net

    Warmest regards,

    Sue

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  • msannie57
    msannie57 Member Posts: 84
    edited December 2007

    Darcie--I think there is a little miscommunication--Sue isn't referring to your son and your concern about him and the DES--she is referring to your own genetic testing to see if you have a genetic mutation predisposing you to breast cancer (BRCA testing).  It's a different issue from the DES issue.  You mention having your son do genetic testing in regard to your DES exposure--they don't have anything to do with each other.  

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  • msannie57
    msannie57 Member Posts: 84
    edited December 2007

    Also, in case other DES women are looking at this section, the risk of breast cancer is slightly increased.  It would be very difficult for an oncologist to state definitively that this is the cause of your breast cancer.  Women who were exposed to DES in utero (and their mothers) should be aware of the risks and be screened accordingly.

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