DES daughters

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bludevil
bludevil Member Posts: 31
edited June 2014 in High Risk for Breast Cancer

My mom is a DES daughter (age 64) which makes me a DES grandaughter... yeah. (note the sarcasm)

For all you DES daughters out there, has that fact changed your treatment and if so, how? 

Mom had a double mastectomy, had 4 dose dense AC treatments, and has had 2 of four dose dense taxol treatments. Radiation probably follows.

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  • spitnspunk
    spitnspunk Member Posts: 138
    edited September 2010

    I'm a DES daughter, was just diagnosed in mid August though so I'm just starting this fight and thus can't answer your question on if it is going to change my treatment. I have a grown daughter too but I didn't realize that me being a DES daughter had any effect on her, what have you found to be YOUR risk with your mom being the DES daughter?

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  • simba
    simba Member Posts: 46
    edited September 2010

    Hi,

    My older sister was a DES daughter. She was diagnosed with cancer the same year I was. Mine was not found early but hers was. It was less than 1 cm and no lymph nodes involved. Her treatment was not different in any way. She had radiation and a lumpectomy. I am metastatic. I was born 5 years after my mother took DES with my sister. Hope this helps.

    Love, Simba

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  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited September 2010

    My being a DES daughter was not a factor in my treatment plan.  Mine was found extremely early so a mastectomy was never a consideration.  I have an older sister who is also a DES daughter, and she has never had an abnormal mammogram.  I know there are some that believe there is link to breast cancer, but at this point it has not been proven and is still being investigated.

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  • bludevil
    bludevil Member Posts: 31
    edited September 2010

    I have found some reseach that says scientists are just starting to study DES grandaughters and grandsons because the majority of us are now in our reproductive years. So far, they haven't found much, which I hope is good.

    I think my mom's biggest concern with her cancer is the fact it wasn't there in her summer 2009 mamogram and was there bright as day on her May 2010 one. It's pretty agressive and extremly estrogen positive, so she was thinking it might have a link. 

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  • Linda54
    Linda54 Member Posts: 2,689
    edited September 2010

    I am not in the high risk catagory buy this topic caught my eye.

    I was going through infertility treatment when my first cancer was found.  I had taken DES as a treatment for infertility.  Even though it caused cancer in mice my doctor told me that I did not take enough for it to cause my breast cancer.  They give large doses to the mice he said.  I was the first and so far the only one in my immediate family to get breast cancer or any cancer. This was 25 yrs ago. I had a lumpectomy with rads.  2.5 yrs ago DCIS was found in the same breast so I had a bi-lateral MX with reconstruction.

    Who can say that the DES I took did not cause my cancer....no one....

    I was 31 yrs old at my first DX and I did not continue infertility treatment.  2.5 yrs later I got pregnant and had a healthy son....and only child.

    I have talked to him about men getting breast cancer and not to ever overlook a lump, no matter how small it is.  DES could affect our sons too.

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  • Elaine586
    Elaine586 Member Posts: 24
    edited September 2010

    I am a DES daughter. My two younger sisters were not. My Mom and both sisters have had breast cancer. One sister is a 5 yr survivor. I have not been diagnosed. I am planning a PBM in Nov.

    But it is interesting, isn't it?

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  • flash
    flash Member Posts: 1,685
    edited September 2010

    I'm a DES daughter.  It did not directly affect treating my BC but it did affect the decisions for preventative surgery (ooph, hyst)  Personally, I am still thankful for DES, without it, I would never have been born.

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  • sunnybluesky
    sunnybluesky Member Posts: 26
    edited September 2010

    I have six sisters.  My four younger sisters were DES daughters. Two had cervical cancer at ages 34 and 42.  One other sister had breast cancer at 43.  All are doing well some 15 years later!  The fourth younger sister is cancer free, thank God. I was recently diagnosed with IDC at age 65.  So out of the seven sisters, four have had cancer.  We would like to know what the factors are--is there a link or just cruel coincidence....

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  • chapstickmom
    chapstickmom Member Posts: 21
    edited October 2010

    The risk of breast cancer in both DES mothers and daughters has been proved. The study was by Palmer and Hatch I believe. I will try to post a link. In daughters the increased risk is for DES daughters over age 40.  There is good information on the CDC.gov website. Search for DES.

    Also I would encourage all of you to join www.desaction.org to keep up with latest developments.

    You should discuss with your doctors options such as anti-estrogen drugs such as Tamoxifen to reduce risk. Decreasing your weight to a BMI of no more than 24. Avoiding animal fat as animals store estrogen in their fat. Avoiding alcohol.  Increasing exercise to 4 hours a week.

    Also be certain to have mammograms yearly and follow the special annual gyn exam also found on the CDC website. 

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  • Azhelenmo1
    Azhelenmo1 Member Posts: 17
    edited October 2010

    I am post bi lat mast and a DES baby , with a daughter , we pay for the best for her

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  • bluegems
    bluegems Member Posts: 733
    edited October 2010

    I'm a 1959 model DES daughter. My stats are below. My mother was also on an obscene amount of progesterone in addition to the DES while pregnant with me. For those of you with daughters, how many of yours have PCOS?

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  • thePuppetLady
    thePuppetLady Member Posts: 127
    edited October 2010
    thank you for this info.  I was recently diagnosed and am in chemo now..will get surgery and rads.  I had completely forgotten my mom had been given this as she had suffered placental previa while carrying me in 1954.  I was born caesarean 2 months premature.  This will be important news to give my onco.....ellen
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  • bludevil
    bludevil Member Posts: 31
    edited October 2010

    I just looked at everyone's signatures, and it seems a majority are ER+/PR+ and HER2- (I know not all, but many.

    Did your tumors come up really fast (like not on a mammogram one year and there screaming the next) and are they highly estrogen positive?

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  • bluegems
    bluegems Member Posts: 733
    edited October 2010

    bluedevil,

    The year before mine showed up, I had to go back for a repeat  mammo, but they said the area "rolled out". The following year, the cancer showed (same area). It was small enough for the docs to say we were very lucky to find it. I saw the striation and knew immediately what it was on the ultrasound though. I am 85 ER+, about 35 PR+ I believe.

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  • bluegems
    bluegems Member Posts: 733
    edited March 2011

    Here's an article that may be of interest.

    http://desaction.org/documents/BreastCancerSuit2010.pdf

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited March 2011

    I'd be so curious to know how common this is. The suspicion that my mother took DES surfaced when I was only 14. I was suffering from horrendous menstrual cramps and my parents took me to a gynecologist. He noticed that I had a "DES daughter looking cervix." My parents then remembered that my mother had indeed taken something during the first 3 mos of pregnancy to prevent morning sickness. The obstetrician had died and the hospital had burnt down so there were no records. However, my father was a pharmacist and he remembered that the pill was DES. I went on to have 4 healthy pregnancies and deliveries. Three yrs ago I had a hysterectomy due to a huge fibroid and at that time they saw that my uterus was positioned strangely, too. I did always mention to whatever gyn I was seeing that I was a DES daughter. No one ever mentioned vigilance about breast cancer. Mine was found on a routine mammogram this summer by a very astute radiologist (lobular isn't easy to see.) I don't know that I would have done anything differently except perhaps lived with more anxiety, so maybe it's better that I wasn't aware of any heightened risk. But I do think that ob/gyns should remind DES daughters to have regular mammograms. Not sure about this class action suit. I have no documented proof besides my father's memory.

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  • bluegems
    bluegems Member Posts: 733
    edited March 2011

    sgreenarch,

    We are among the lucky ones able to have children. I was blessed with 2 but suffered the loss of a preemie before my daughter was born 9 weeks early. My IDC was found by a routine mammogram. I'm almost 3 years out of radiation, and just had the mammo that put me back on the yearly schedule. I'm not interested in the lawsuit, and although I think DES exposure is related to my breast cancer, there's not enough concrete evidence to say DES causes breast cancer. But I put it out there for those who might be interested.

    I've known about the DES since I was 11, but didn't know about the T-shape uterus and incompetent cervix until I lost my first son. Unfortunately, I find myself educating my docs about DES. We're retired military, so I've seen many as we've moved or they've moved. The gyn was going to wait and watch the vaginal lump I found recently. If I hadn't mentioned I was DES exposed (again), he wouldn't have biopsied it. Fortunately it was just fibrous, and afterwards he was willing to look at the pap procedure recommended for DES daughters even after a hysterectomy.

    It's up to the ladies to push for yearly mammos, now that the guidelines have changed again. DES exposure puts a woman in a separate category, and she needs to be persistant with her doc or find another who is willing to be educated on DES if (s)he isn't already.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited March 2011

    Dear Bluegems,

    You are right that we should be grateful for having been able to have children. I don't know enough about this, but the more I read, the luckier I realize that I am. BC has taught me to feel grateful in general, for many things. I'm down one breast but I've learned to appreciate all the wonderful things I do have.

    You seem to know much more than I about being a DES daughter. Do you know if there are any heightened risks for the other female cancers, such as ovarian, fallopian tubes, etc? You mention a special pap procedure. Are there any other special tests needed especially for us? Not to bother you, but do you know of a website that would outline this?

     I'll tell you one thing I've enacted immediately post BC dx. I removed all extra estrogen that I have the power to remove, from my life. I try to avoid using environmental agents that can work as estrogens in the body, such as BPA plastics, certain cleaning agents, pesticides, cosmetics, etc. I also now only buy organic dairy and meat products that are hormone free. I've got a theory that some of us with ER+ BC who've also had estrogen driven fibroids and gallstones just might be hyper-reactive (or something) to estrogen.  I'd love to know if this is more true of DES daughters, just out of my own curiousity. I agree with you about the lawsuit, but I would like docs to be more aware.

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  • bluegems
    bluegems Member Posts: 733
    edited March 2011

    sgreenarch,

    Although I've kept up with the DES info for years, I really am not an expert in it. I recently joined DES Action  http://www.desaction.org/   Their website is chock full of information and research. You can also go to www.cancer.gov/cancertopics/factsheet/Risk/DES for a comprehensive Q&A.

    I too, am very careful about anything that might act as an estrogen, to include sunscreen. I use only titanium dioxide and zinc oxide - no oxybenzone or avobenzone for me! I had to do 4 weeks of premarin cream after my vaginal biopsy in order to heal correctly, but I offered that one up to God.

    Hope this helps. Take care,

    Judy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    I was a DES baby.  Born in 1955.

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2011

    thanks for the info on DES and website.  i am a DES baby (born 1952) . This didn't affect my treatment in anyway.  (was in a clinical triall for TAC back in 2002) 

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  • Huskapet
    Huskapet Member Posts: 3
    edited March 2011

    I have sisters born 1944 And 1950 and we are fairly certain mom took DES for them, not so sure about me (born 1961). One sis had cervical cancer with clear pap smears and without risk factors, and both of my daughters (DES granddaughters) have gynecological and autoimmune issues. I do not have bc but worry about DES as a factor and am highly suspicious about sister's cervical cancer.



    Mom died before we could ask more questions, and dad, 95, has no clue. I have also read some things about gender dysphoria in DES grandchildren.

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