DES Daughters are at an increased risk for clear cell adenocarcinoma (CCA) of the vagina and cervix, cervical intraepithelial neoplasia (CIN), reproductive tract structural differences, pregnancy complications, pre-term delivery, and infertility and therefore should be monitored throughout their lifetimes. The following are steps you can take to protect your health.
- Schedule regular gynecological exams, including Pap test and pelvic exam
The National Cancer Institute (NCI) published a description of appropriate pelvic examinations for DES Daughters. Pelvic examinations for DES Daughters should be performed in a similar manner as those performed among unexposed women.
Pelvic examinations in DES Daughters should include
- careful visual examination and palpation (feeling) of the vagina and cervix with rotation of the speculum so that all vaginal walls can be inspected;
- Pap smears from the cervix and the surfaces of the upper vagina; and
- iodine staining of the vagina and cervix or a colposcopy, depending on the detection of any abnormalities during the examination. Iodine staining allows your health care provider to evaluate changes in the cervix or vagina. A colposcopy uses a device that works like a magnifying glass, allowing your health care provider to carefully check the vagina and cervix. Your health care provider may take photographs using the colposcope so that any changes in your condition can be monitored during future examinations.
- Schedule clinical breast exams and regular mammograms
Studies have not found a statistically significantly increased risk of breast cancer among DES Daughters of all ages. However, a recent study did find significantly increased risk among DES Daughters over age 40. Since this was the first study to identify a link, research will continue to see if results will be repeated and to determine if DES Daughters of other ages also have a greater risk of breast cancer. While research continues, DES Daughters should be screened for breast cancer with the same tests and at the same intervals as women in the general population. The following actions can help you protect your health.
- Most health care providers recommend that women 40 years of age and older have a mammogram (an X-ray of the breast) every 1-2 years.
- In addition, most health care providers perform a clinical breast examination (visual and manual examination of the breast) during routine physical examinations. Guidelines for breast cancer screening can be found at the National Cancer Institute (NCI) Web site (www.cancer.gov) or the American Cancer Society (ACS) Web site (www.cancer.org). A description of mammography can be found at the ACS Web site by typing "mammography" in the Search box on the Home page and then clicking on the link to the Glossary and typing "mammography" in the cancer-related terms box.
- Perform monthly breast self-exams
Most health care providers recommend that, in addition to getting recommended mammograms you learn and practice monthly breast self-examination as a way to detect any lumps in your breasts, discharge from the nipples, or skin changes (such as dimpling or puckering). Instructions for breast self-examination can be found at the ACS Web site by typing "breast self-exam" in the search box on the home page (www.cancer.org) and then clicking on the link "How to Perform a Breast Self-Exam."
- Obtain information regarding low-cost or free screening
To find out where you can get a free or low-cost Pap test or mammogram, visit CDC's National Breast and Cervical Cancer Early Detection Program Web site at http://www.cdc.gov/cancer/nbccedp/index.htm or call toll-free 1-888-842-6355.
- Seek infertility counseling if you have difficulty becoming pregnant
DES Daughters are at an increased risk of infertility. Your health care provider should be informed about your pregnancy plans so that he or she can communicate to you the risks of infertility. Although no single test, treatment, or screening is necessary because of your DES exposure, your health care provider may recommend that you undergo certain tests or screenings appropriate for your risk. For example, your health care provider may perform a hysterosalpingogram. This is an X-ray that can check for structural differences and physical alterations in your upper genital tract.
- Treat pregnancies as "high risk"
DES Daughters are at an increased risk of pregnancy complications and should be sure that their health care providers consider their pregnancies "high risk" and establish an appropriate plan of action. Your provider may suggest more frequent check-ups or tests to ensure that your pregnancy is progressing properly.
- Talk with your family, especially your children, about DES
Research on the health risks of the third generation (the offspring of DES Daughters and Sons) is just beginning, and the results are preliminary. Research will continue as these children age. If future research identifies health risks for the third generation, informing them about their DES exposure will become even more important. To help protect your child's health, consider taking the following steps.
- Note your DES exposure on your child's health record. For a DES health information form, click here.
- Notify your child's health care provider about your exposure to DES.
- To learn more about the ongoing research of the third generation, refer to the section of CDC's DES Update titled Recent DES Research.
- Request copies of CDC's DES Update to share with your children. Order copies online or call toll-free 1-888-232-6789.
- Share the DES Self-Assessment Guide
As you talk with others about DES, they may wonder whether they were exposed to DES. To assess whether you or others may have been exposed to DES, use the Interactive DES Self-Assessment Guide or order a copy of the print version.
- Stay up-to-date on DES research
Researchers continue to study DES and may learn more about the health effects of DES exposure. For more information, refer to Recent DES Research.
- For more information about
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