ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
DES was given to pregnant women starting in the mid 50s to prevent miscarriage, etc. My mom took it while she was pregnant with me as she had previous miscarrages.
Back in late '60s early '70s they found an increase in uterine cancer in the daughters. The drug was pulled from the market in 1971. So when I was 13 my mom took me to my first gyno appt. What fun!
So now they are finding that these daughters have a 2 1/2 times greater chance of breast cancer from age 40 up. Although I have no family history, I was diagnosed with breast cancer at age 49 last year.
I did a little reading on this and further discovered that the type of tumor I had was the type associated with those of DES daughters.
And taking this a step further, I see that DES is also linked with problems with immune system function.
Wow! So having Lyme I find that my immune system perhaps does not work as well as others and that certainly could be a factor as well.
I am not the type of person that sues, but I did hook up with a law firm who is handling DES/breast cancer cases. They took me through a series of questions and said everything matched up. That it is highly likely that DES exposure caused my BC.
Just putting this out for others, especially since I found this info about the immune system. Pretty scary if you ask me. A drug that is causing problems 50 years after you are exposed.
If you are a DES daughter, make sure you google "DES and breast cancer". You need to know that your risk of BC is on up there as compared to most.
Posts: 2276 | From NC | Registered: Oct 2000
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Connie,
What is DES?
How can one find out if this is what was administered to the mom?
My mom received medications that she took to prevent miscarriages as she had one before my (older) brother was born as well as a miscarriage before I was born. Both in the late 1950s.
There is also breast ca. in the family but on my father's side (his mother). I am always leary of BC for just that reason and try to be regular about my check ups/mammograms.
But this also interests me as I needed a hysterectomy at age 38. Plus the Lyme, etc. My mom has excellent health and is in her 80s.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Hi Meg - I have just started exploring all this. The law firm says that if I even have any records at all from anytime in my life where I reported DES exposure, that will be enough. However, I do not remember when I stopped reporting this, so we will see. My mother died a couple of years ago but my Dad remembers this well.
My Dad tells me I was conceived in TEXAS (wow - a little Texas blood in there) and was born in VA. So exposure happened both states. Dad was in the AirForce at the time.
The immune thing was really surprising. There isn't much out there on this, but would be an interesting study. That was sort of why I was asking on here. To see if there were lots of folks who had this exposure. Many women on here are in this age group 30 to 50. Guess it is scary that I don't know if anything else is in store for me from this drug.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
The results of the "Palmer study" set this all off. It is discussed in this info copied from DESaction.org:
What are the chances I was exposed to DES?
If you were pregnant between 1938-1971 and took any medications for bleeding, miscarriage, premature birth or diabetes you may have been prescribed DES. If you were born during that time frame, ask your mother (or other relatives who might know her pregnancy history) about any medications she may have taken while pregnant with you.
How can I find out if my mother took DES while pregnant with me?
While there is no definitive medical test, you can visit the CDC's DES Update website at www.cdc.gov/DES and take the Self Assessment Guide. You can also call DES Action at 1-(800) DES-9288 for information about tracking down medical records.
What is my risk for cancer as a DES Daughter?
All DES Daughters (women whose mothers took DES while pregnant with them) have a lifelong risk for a rare cancer of the vagina or cervix called clear cell adenocarcinoma. This cancer is practically nonexistent in non-exposed women in this age group, and occurs in about 1 in 1,000 DES Daughters.
DES Daughters should have an annual special pelvic exam to detect this cancer. DES Action's website at www.desaction.org and the CDC's DES Update website at www.cdc.gov/DES have information about the exam for both patients and their doctors.
New research indicates that DES Daughters also run an increased risk for breast cancer, so DES Action urges annual mammograms and clinical breast exams, as well as monthly breast self-exams.
What is my cancer risk as a DES Mother?
Women who were prescribed DES while pregnant have an increased risk for breast cancer so DES Action advocates the same breast care as indicated above for DES Daughters.
What about DES Daughters in their reproductive years?
DES Daughters have an increased incidence of structural changes in their reproductive organs. These may or may not be linked to pregnancy problems and are not known to be linked to cancer. DES Daughters do have an increased risk for infertility and may want to see a doctor experienced in treating DES exposed women. DES Action has a free doctor referral list available by calling (800) DES-9288.
Most DES Daughters can become pregnant and carry their babies to term. However, they do have an increased chance for life-threatening ectopic (tubal) pregnancies, miscarriage and preterm labor and delivery. As a result, they require high-risk obstetric care (whether they have had previous normal pregnancies or not).
Should DES Daughters use hormone replacement therapy (HRT)?
Many women worry about using HRT and that is especially true for DES Daughters who have already been exposed to unnatural levels of estrogen. Given recent findings that HRT use carries greater risks than benefits, DES Action discourages its use for DES Daughters.
Does DES affect the children of DES Daughters and Sons?
Provocative animal research indicates third generation mice (offspring of DES Daughter mice) exposed to DES have a higher rate of reproductive organ tumors later in life. We don't know if it holds true for humans but more scientific studies are needed. When results are in, they will be posted on the CDC's DES Update website at www.cdc.gov/DES and at this website.
Are there health affects for DES Sons?
DES exposure can also affect men. Some DES Sons (whose mothers took DES while pregnant with them) run a higher risk for one or more genital problems, including undescended or underdeveloped testicles, cysts on the back of the testes (on the epididymis) and lowered sperm count. DES Action is calling for more studies to determine whether DES Sons face an increased risk for cancer or other health problems.
Can DES affect the immune system?
Some studies have shown an increased incidence of autoimmune diseases (such as lupus, rheumatoid arthritis, and Graves Disease among others) among DES Daughters. It is quite possible DES affected the immune system as well as other bodily systems, and researchers are studying this question further. When results are in, they will be posted on the CDC's DES Update website at www.cdc.gov/DES and published in DES Action's newsletter, the DES Action Voice.
Does DES affect the children of DES daughters or sons, the so-called "third generation?"
Little research has been done on this subject, so we do not know the answer. The National Cancer Institute is considering plans to study this subject further, and DES Action urges research into this important topic. Animal research conducted at the National Institute of Environmental Health Sciences has revealed a higher risk for reproductive tumors in third generation offspring of female DES-exposed mice.
What about menopause and hormone replacement therapy?
No studies have clarified whether DES affects the menopausal experience itself. Recent revelations about the many risks associated with menopausal hormonal replacement therapy have strengthened DES Action's conviction that DES mothers and daughters should avoid HRT.
Do DES daughters have a higher risk for breast cancer?
From statements by Dr. Julie Palmer reporting on results of a National Cancer Institute survey of DES daughters:
"We found no association between DES exposure and risk of breast cancer before age 40. In fact, DES-exposed women had a slightly lower incidence of breast cancer, although the decrease was not statistically significant.
"The second analysis looked at experience at ages 40 and older, and in this analysis we did observe a positive association. DES-exposed women were estimated to have 2.5 times the risk of breast cancer as compared with non-exposed women of the same ages. This increase was statistically significant. Most of the women had not reached age 50 yet so this 2.5 times higher risk primarily refers to women aged 40 to 49 . . ..
"Because the numbers are so small we still do not know whether or not prenatal DES exposure influences the risk of breast cancer in the daughters, and this is probably frustrating news for women who have been exposed.
"Fortunately, we have been able to continue follow up in the study, and we're now receiving back the latest questionnaires. These questionnaires cover four or five years since the last analysis, and most of the women in the study are not in their 40s or 50s, which is the age at which breast cancer becomes more common.
"We expect there to be an appreciable number of new breast cancer cases reported since the last questionnaire. Enough cases so that future analysis is likely to provide more definitive results, and in the future we may also be able to look within specific sub-groups of women. For example, examine what is the relation between DES exposure and risk of breast cancer among women who have a family history of breast cancer or among women who have never given birth or among women who have used hormone replacement therapy. These are obviously all questions of interest. Thus we hope to have more informed results for you in the next year or two."
I've heard that DES can affect the immune system. Is this true?
Some studies have shown an increased incidence of auto-immune diseases (such as lupus, rheumatoid arthritis, Graves disease) among DES daughters. It is quite possible that DES affected the immune system as well as other body systems, and researchers are studying this question further.
What about legal action? Can I obtain some compensation for my DES injuries?
There is not and has never been any class action suit. Many DES-exposed people (primarily daughters) have as individuals sued the drug companies who manufactured DES and have obtained compensation. Your ability to sue depends on many factors, including the statute of limitations and laws in your state and your own injuries. DES Action maintains a National Attorney Referral List of attorneys who handle DES-related cases.
Posts: 2276 | From NC | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by tabbytamer: Connie,
What is DES?
How can one find out if this is what was administered to the mom?
My mom received medications that she took to prevent miscarriages as she had one before my (older) brother was born as well as a miscarriage before I was born. Both in the late 1950s.
There is also breast ca. in the family but on my father's side (his mother). I am always leary of BC for just that reason and try to be regular about my check ups/mammograms.
But this also interests me as I needed a hysterectomy at age 38. Plus the Lyme, etc. My mom has excellent health and is in her 80s.
Tabby,
I would bet money that you are a DES daughter. At the time you were born, this was THE drug for these types of problems. And I understand it was given quite liberally.
Any chance your mom would remember? Do you remember anyone telling you when you were a teen that you might be at higher risk of cervical cancer?
Do check it out.
Posts: 2276 | From NC | Registered: Oct 2000
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posted
I was born in 48 and had to have a hysterictomy before the age of 35 thanks to being a DES baby
Posts: 8 | From santa rosa | Registered: Aug 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Connie, thanks for this MEDICAL info!
I contacted desaction and an extremely kind representative immediately sent me this info on how to search for medical records:
Kind of long, but I think worth posting so any of us can get a head start on searching:
HOW TO LOOK FOR MEDICAL RECORDS
We suggest writing and enclosing a stamped self-addressed envelope rather than make a telephone call to the sources below (with the exception of requests for military records).
You are most likely to get a response if you make it easy for the office to reply. Persistence is also important. You may have to try several times to obtain copies of the records.
Be aware that time is not on your side. As doctors die and hospital close their records are often destroyed. Still, it is worth at least making the effort to try and get your records.
Contacting the Doctor
If the doctor is still practicing, ask in writing for a copy of any records showing medicines you (or your mother) took during pregnancy.
Be specific with names and dates. Include a stamped, self-addressed envelope.
When a physician retires or dies there is a chance the practice is transferred to another doctor who takes over the records.
You can write or call the local County Medical Society and ask who has he doctor's records now.
You can get the address from the County Health Department or the State Board of Medical Records. Unfortunately, though, many records are destroyed when a doctor dies.
Contacting the Hospital
Write to the Medical Records Department of the hospital where your pregnancy or birth took place.
A consent form from your mother may be required for release of medical records. If that is not possible, state that you are requesting your own birth records.
Give your mother's name, the name of the doctor present at delivery (usually listed on your birth certificate) and your date of birth.
Ask what medicines taken during pregnancy are listed on your mother's records.
Contacting the Pharmacy
If you know what pharmacy was used, you can request a copy of prescriptions filled during your mother's pregnancy.
Include her name and the approximate date of her pregnancy. Some pharmacists have records going back many years; others do not.
Interpreting the Prescription
Sometimes it is hard to tell if a prescription contained DES. Other medications that did not contain DES were also given to women during pregnancy.
Click here for a list of names under which DES was prescribed. Usually, though, in the United States it was listed as either DES or Stilbestrol.
Who Owns the Medical Record?
Medical records belong to the health care providers or hospitals that compiled them.
However, the information about your mother's pregnancy and your birth - which is included in your mother's medical record, is also your medical record.
How to get Military Records
If your mother received pregnancy care from the military, you can request a copy of the medical records by calling (800) 827-1000 and requesting Standard Form 180.
If You Cannot Find Any Records
If you cannot find records but have reason to believe you were exposed to DES, you may want to follow care recommendations established for DES exposed individuals.
That includes annual DES pelvic exams for DES Daughters, and annual breast screenings for Daughters over age 40.
DES mothers should also be screened every year for breast cancer. DES Sons should do testicular self-examinations regularly.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by meg: This post is still up in Medical and you can access it! ?
But you cannot respond to it and keep it up so others can see it.
Do you all realize how many women on this board are between 30 and 55? New info comes out that DES can cause BC and immune problems, but the moderator thinks this is off topic?
I continue to be amazed at how others can decide what's important for us.
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Thanks for the info in searching for medical records, Tabby. This could be used any time someone is searching for their family medical history.
My mom died a couple of years ago. Wonder if you can obtain records on your mom if she has died?
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posted
I don't think there's any way I can obtain my mother's records. Her dr died when I was about 3 yrs old.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
I thought this was an interesting statement (from the getting records note above):
However, the information about your mother's pregnancy and your birth - which is included in your mother's medical record, is also your medical record.
So, apparently, legally we have the right to records involving our birth (?).
The problem would be if those records still existed or if they have been destroyed due to the length of time that has passed, etc.
The only way we could know, I guess, would be to start asking.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Interesting tidbit of info ... one of the law firms representing women injured by DES are working with experts to develop genetic testing to prove exposure to DES before birth. Now that's interesting.
I will probably work on looking for records. My family still lives in the area where I was born so it won't be too difficult to determine where records might be.
I sent off for a package of info about all this and if I see anything interesting about the immune system damage suspected to be caused by DES, will certainly post this. Would be amazing to learn after all this time that my immune system is damaged as well.
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