Have you ever thought like me that the DES nightmare was behind you? This week the sad and painful reality of DES exposure hit me again after reading a message from Sharon, a 39 years old DES daughter who has recently been diagnosed with breast cancer.
“I have never tried to tie together everything that I have been through with my exposure to diethylstilbestrol. I truly thought that since I was able to have a baby, that was all there was to the story” says Sharon.
Her Breast Cancer Journal really moved me and made me want to find out more about DES exposure and breast cancer risks. The information found on the Net did not reassure me and made me even more concerned and upset.
A 2006 study published in the August issue of the journal Cancer Epidemiology, Biomarkers & Prevention shows that DES daughters are at higher risk of breast cancer as they age than are women who weren’t exposed to diethylstibestrol. A DES daughter is already known to be at higher risk of clear cell carcinoma of the vagina and cervix and her mother has already been shown to be at higher risk of breast cancer. This study just highlights once more that the DES side effects can continue to affect the lives of those who have been exposed to the drug, long after exposure.
The finding of this study supports the hypothesis that one risk factor for breast cancer is prenatal exposure to higher than normal levels of estrogen which is the case for the children of the mothers who have been prescribed diethylstilbestrol during pregnancy. That theory has been around, but it has been difficult to study. Unfortunately for DES daughters, the DES tragedy offers scientists a direct way to test / confirm this hypothesis.
According to the study, DES daughters 40 or older have nearly twice the risk of breast cancer than women who have not been exposed. The rate ratio is even higher for women 50 and older, but the numbers of women in that group age were too few at the time of the study to make a precise estimate of risk.
In addition, having no children or having a first child at age 30 or older, which is often the case for DES daughters due to the infertility / pregnancy problems caused by diethylstilboestrol, also increases a woman’s risk of breast cancer.
The Centres for Disease Control and Prevention (CDC)’s DES Update encourages DES daughters to follow a regular schedule for breast cancer screening, be breast aware and practise self-examinations as a way to detect any lumps in the breasts. Scheduling mammogram examinations every 1-2 years for women 40 years or older is also highly recommended.
These screenings and examinations are not cheap procedures. I recently had to convince my GP to let me have PAP/Smear tests annually when the UK National Health Service (NHS) only recommends them every 3 years but I was told that I would have to pay for them. Luckily, I have a private health insurance who after a long and animated phone conversation agreed to cover for the cost of annual smear tests under a special personal health fund that I wasn’t aware existed in my policy. As per an annual mammogram examination, a bit more convincing is still needed before my physician confirms it is justified under my circumstances. The cost involved won’t be be covered unless I have symptoms which would justify a mammogram.
“We can’t be too safe. Interesting that your physician also says it’s no big deal. My fear is that many of them don’t understand it, and much of our medical care depends on the fact that they do” comments Sharon.
If I were a heavy smoker, the risk of cancer would be taken a lot more seriously and I would most probably not have to do all this convincing to have regular thorough health check-ups. My GP would not listen to me with that look on her face leaving me feel paranoid and hypochondriac. It raises the same question over and over again: what will it take for health care providers and the NHS (or the equivalent in other countries) to take DES daughters seriously and provide us with the preventive care and support we need? Don’t they know that people are suffering from cancer caused by DES exposure as I write this blog post? DES is not something of the past. Sharon’s breast cancer was diagnosed in January 2011. She was exposed to DES in 1971, like me.
So for those of us who may think the DES nightmare is behind us, think twice. A DES daughter must stay vigilant about breast cancer screening, including regular mammograms (if you can afford it), and be careful about using supplemental hormones. As Sharon too rightly says in her Breast Cancer Journal, the DES threat is always there, it is not a matter of if but when. I wish Sharon and her family all the best in her battle against breast cancer.
Sources: CDS’s DES update, MedPageToday: DES Daughters at Higher Risk of Breast Cancer by Michael Smith.
Thank you for spreading the message about the ongoing risks of DES. You are doing more than many governments!
Carol Devine, DES Exposure Australia
I was diagnosed with breast cancer at age 46 10 yrs ago! I now have metastatic breast cancer in my bone, which is incurable. My mother had my Sister in 1953, and then suffered two miscarriages, she then had me in 1955. I saw a programe about 25yrs ago in Britain about this drug which was prescribed to prevent miscarriages in Women who had a history of miscarriage. I suspect my Mother may have been given this drug and did join the DES Daughters group, but I moved house and forgot all about DES. I did have problems with Fertility and had a miscarriage at 37 followed by a hysterectomy. I do wonder if my problems were caused by this drug! Angela
Thanks for your comment Angela. I am no expert but you seem to have very good reasons to think that you might have been exposed to Diethylstilbestrol. DES daughters have lots of telltale signs about their exposure and your story and health issues are very similar to what many DES exposed women have experienced. If you are unsure of your DES exposure and don’t have access to your Mum’s medical records / prescriptions, you can complete an online DES Self-Assessment Guide to help you figure out how likely it was that you were exposed to Di-ethyl Stilbestrol. It can be found on the Web – Best wishes, DES Daughter
My mother told me about being prescribed DES when she was pregnant with me. She took it for the first three months while pregnant with me in 1953. I was diagnosed with breast cancer at the age of 55 in 2008. I struggled with the effects from chemo and major surgery and am still trying to get my strength back. I lost three years of my life fighting this disease. I was not aware that DES could cause breast cancer until I spoke to my doctor and started looking online. This is indeed a frightening drug.
Suzanne
My Mom took DES while pregnant with me. I was born in 1953. I had an abnormal cervix and at age 17 had cryosurgery for that. With my first pregnancy in 1971, I was put on hormones (thank God, not DES) because I was trying to miscarry. I did have a healthy daughter in 1971. My second pregnancy, I had a 2nd tri-mester miscarriage. The I continued to have female problems until they did a complete hysterctomy (ovaries & cervix too) on me at the age of 22! Now my daughter is suffering from infertility! She was blessed to finally have 2 healthy children, but had to go through IVF to get them and trying everything else. This makes me think that it does continue on to the next generation….which is devastating. More research needs too be done and doctors need to be made aware of the seriousness of this problem.
I like reading a post that will make men and
women think. Also, thanks for permitting me to comment!
Thorsten
I am 51, a DES daughter, and recently diagnosed with Stage 0, possible multifocal DCIS breast cancer. After a biopsy and lumpectomy, my diagnosis is II, with extensive DCIS throughout breast, no clear margins, and invasision of less than 1/2 cm. I am TRYING to get doctors aware that I’m a DES Daughter with potential risks for the drug tomoxifin. I have read about this drug, and it is only to be cautionly used with DES exposed (uter0) daughters. I am wondering how many have opted for a masectomy or a double masectomy? My report shows “comendo” which is aggressive, but not in nodes. Praise God. I just don’t want it to go further, or et it again in the other breast . Also lumpectomy taken as far down as chest wall. Am nervous about side effects of radiation to other areas, and obviously the effects of tomoxifin. Doctor told me masectomy would be extensive (almost to scare me) and that I would most likely need tomoxifin anyways. That didn’t make sense to me. Bottom line I am asking is has any DES daughter diagnosed with extensive DCIS opted for the masectomy route to avoid medication treatment side effects. Would love to hear views from others sitting where I am now. I would also like to take this opportunity to wish all those dealing with this, or a loved one dealing with this the best of luck……We will get stronger!