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DES Daughter Caitlin McCarthy: "You Might Not Have Cancer Today, But You Could Tomorrow"

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Worcester, MAFor Caitlin McCarthy, one of the many women who was exposed to DES (diethylstilbestrol) prior to birth, discovering she was suffering from DES side effects was a shock. She had no idea she had been exposed to the drug, and therefore had no idea about the link between DES and cancer, or the health risks she faced. But that shock did not stop McCarthy from lobbying to obtain an apology from the US Food and Drug Administration (FDA) for its role in the DES pregnancy tragedy.

"I found out later in life that I was exposed to DES in utero," McCarthy says. "I didn't find out until 2005, at the age of 35. Unfortunately, I'm not alone in not knowing I was exposed. There were a lot of women who were pregnant and were aware that they were given DES. But some were prescribed prenatal vitamins with DES in them, so they were exposed but had no idea."

McCarthy had a history of precancerous cell activity, but she did not have HPV and her doctors, many of whom were not aware of DES, were unable to explain the problem. Finally, McCarthy visited a doctor who had experience with DES daughters.

"Within two minutes of looking at me, Dr. Louis Burke said, 'What year were you born?'" McCarthy says. "I told him 1970 and he asked if my mother took DES. I told him I didn't know, but she was with me so we could ask her. She told him she hadn't taken it directly, but that she was prescribed prenatal vitamins and we found out those contained DES. It was devastating for me."

So far, McCarthy's health problems have not progressed beyond precancerous cell activity. But she has special tests every year to ensure that has not changed. She says she lives in fear that at any point, her health situation could change and she will find out she has cancer.

"I'm living under a medical guillotine," McCarthy says. "I'm always afraid at the time of my pap smear that this is going to be the year. There's that fear you live with—both the DES daughters and sons live with it. You move on with your life, but it's there hanging over you. You wonder if something will go wrong with you. You might not have cancer today, but you could tomorrow. No company has taken responsibility for the tragedy or apologized for it."

McCarthy was so appalled by the handling of DES that she worked with Senators John Kerry and Scott Brown to get the FDA to acknowledge in 2011 that DES was a tragedy. Although the FDA did not apologize for its role in the tragedy, McCarthy says the acknowledgement was important. Now, her focus is on educating people about DES.

"There are other people out there who do not know they were exposed to DES," McCarthy says. "They may have fertility issues and are considering treatment, but should they be exposed to additional estrogen? If they don't know they're a DES daughter, they might make a decision that puts them in harm's way."

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READER COMMENTS

Posted by

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Thank you Caitlin for speaking up for those like me who have been living with the effects of DES. I found out I was exposed to DES at the age of 17. My mother had suffered 9 miscarriages after having one normal full-term pregnancy. She was gived large doses of DES while pregnant with 1 older brother, myself and 1 younger brother compete with bedrest for months.I was born 5 weeks early weighing a mere 4 lbs.12 ozs. I had terribly painful periods that caused faintness & vomiting. I would miss two days of school each month because of it. My first pap smear showed pre-cancerous cells. I was taken into surgery, requiring a D&C and cervical conization,which a large part of my cervix was removed. I also had HPV which required many cryosurgery treatments to my partial cervix. After several years of infertility and months of fertility drugs I became pregnant with twins. However at 11 wks.I required surgery to suture my partial cervix closed as I was dilated to 3 cm. I spent the rest of the pregnancy on strict bedrest, delivering twins at 35 wks. After my son was delivered, I delivered my baby girl next. Her placenta was embedded in my uterine wall, causing life-threatening hemorrhaging,requiring several blood transfusions and possible emergency hysterectomy to save my life. I developed a uterine infection following this,keeping me in hospital for 9 days. Two yrs.later I became pregnant, requiring another cervical cerclage at 14 wks. That baby girl was full-term.However after her delivery, again the placenta was imbedded in the uterine wall causing another hemorrhage on the delivery table. I became pregnant in 1993 requiring yet another cervical cerclage. But because of my post-delivery complications in the past, the doctor was prepared, but my cervix tore while delivering him. I required a hysterectomy at age 42 due to extreme varicosities affecting the uterine and ovarian veins.Mammograms show very dense tissue, putting me at higher risk for breast cancer. These are all due to the DES my mother was prescribed by Eli Lily, one manufacturer of DES.My daughters suffer/ed from frequent periods ( every 2 wks) and heavy bleeding . I do not know what will become of my chldren when it comes time for them to start their families due to my DES exposure. Thank you Caitlin for being a voice for all us DES Daughters, a drug that was never tested for effectiveness or harm!

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Thank you Caitlin McCarthy for speaking publicly about DES. I have know about this drug since I was 16 when I asked my mother why my nipples were inverted. Every mammogram I have they tell me that my breast are very dense and they recommend a second test. She proceeded to tell me that when she was pregnant with me the doctor gave her DES to prevent her from going into early labor. When I was 16 I got pregnant. I do recall the doctor telling me I shouldn't have babies. At that time I didn't connect the two and found myself pregnant again at the age of 22 with my second daughter. She was my biggest baby and what seemed to be very healthy. At the age of 7 months she succumbed to meningitis. Against my doctor's advice one year later I gave birth to my 3rd daughter. Throughout my early 20's I was constantly having irregular periods as well as pre-cancerous cells showing up on everyone of my pap smears. I had cryosurgery to try and freeze the cells but to no avail. Eventually I had to make the decision to stop having babies in hopes that my cervix will stop swelling which it did all the time. The doctor finally decided to give me a hysterectomy when I hit my 30's. Now I watch my daughters go through all the same things that I did from pre-cancerous cells on their cervix and uterus.

Posted by

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Imagine my surprise when my symptoms started and I found the DES connection. I am now waiting for biopsy results for CCA and have had 2 prior breast biopsies. The dark cloud will never leave me or my DES family who is accountable? I was a fetus and my mom trusted her doctor in 1960.

Posted by

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Thank you Caitlin for all your hard work! I am also a DES daughter. I had numerous precancerous cells burned off my cervix, months of bedrest while pregnant and surgery to hold my cervix closed while I was pregnant. I also had breast cancer twice. I am sure my cancer was caused by DES. I am otherwise low risk. My mom was also diagnosed with a rare breast cancer er positive. I also believe her cancer was caused from DES. The only ones that seem to be in denial are the drug companies that pushed these drugs on our mothers.

Posted by

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Thank you, Caitlin, for raising awareness about DES. I was exposed in utero and guess what? I DID get breast cancer in my mid 50's. I know it was from too much estrogen in utero. I am angry for what the drug companies did to us and even more angry at their attitude of 'we didn't do anything wrong'. Someone needs to tell them that Denial isn't a river in Egypt. Of course drug companies lie - to cover their butts. The DES issue is not going to go away. My daughter is affected. Now we're talking about third generation! Thanks again for all you do!

Posted by

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I was born in 1961, I have 4 sisters. My two oldest sisters had hysterectomys. My oldest could not get pregnant, she paid privatlely for artificial incemination for years, when she finally got pregnant through a fertility medication, she miscarriaged in a few months, she had to get a hysterectomy for her 40th birthday , d/t the strangulation of endometrial tissue. My second oldest sister had a hysterectomy and formed adhesions, she would have died if not opted for exploratory surgery. My 3rd oldest sister continually goes through bouts of irregular and painful menses. I am the 4th born daughter. I have suffered with extreem , exessive bleeding, and dys menorhea my entire life, my first menses was at age 9 and lasted 10 weeks. In 2009 I started bleeding for approx. 3 months, my logest brake was about 3-4 days. I had a radical hysterectomy. It only got worse, I woke up after the surgery feeling like I had a fractured hip, and pain in the left bottom of my back. To this day I am still in pain. I feel a lump, and the surgery effected my bladder. My hip feels better, but my back actually does not want to swivel like it should. It hurts extreemly when I try to rise. Even before the hysterectomy, myself and my sisters suffered with fibrocystic breast lumps, and still do. I have had several bouts of cervical cancer that was addresses with cryosurgery. I know my sisters have too.
I also had colon palyps removed. I have a brother born in 1962 that has never fathered a child. My youngest sister was born in 1972, she is the only one that has children besides myself out of a family of 6 children., and I can pretty much say that if I haden't had my children at an early age, I may not have been lucky enough to be a mother. I would have ben devestated like my oldest sister. We are posative our mother took the DES drug with her vitamins. She is older now and doesn't think as clearly, but has told us that te doctor admitted to giving it to her before he died, but the records have been destroyed, but he wanted her to know. Our family alone has suffered from DES drug severely, I can't imagine how many peoples lives it effected. I got this information from my youngest sister who wanted my to pass our information on. As a nurse myself , I just can't imagine how this drug got out there with out FDA approval. Although we all know in the 1970's, Rittalin the drug of choice for ADHD was used for labor. Thats pretty pathetic if you think , how did it get to be a drug used on children? What kind of doctor decided to make that experiment on a childs brain? Anyway, if you need more information, send me an email. Thank you, Its about time someone takes this seriously.... T. itt

Posted by

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Thank you Caitlin McCarthy for speaking so publicly and candidly about DES. That can't be an easy thing to do. You have real guts. I wish you the best.

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