The DES Cancer Network

HEALTH CARE
GUIDELINES

Health Care Guidelines for DES-exposed Women and Men

Talking to your health care provider
If you know you are DES-exposed, or think you may be, tell your doctor. Make sure your history of DES exposure is recorded.
Learning if you are DES-exposed
If you were born between 1941 and 1971 and are unsure you are DES-exposed, see a doctor who is experienced in the care of DES-exposed individuals. Ask your doctor if there is evidence of any changes in your reproductive tract. Ask your mother, or her relatives, about her history of pregnancy problems. Was she prescribed any medication or vitamins during her pregnancy with you to prevent miscarriage, or improve the pregnancy?
If you were pregnant between 1941 - 1971, review your history of pregnancy problems. Were you given medication or vitamins during pregnancy to prevent miscarriage, or improve the pregnancy? This may indicate DES exposure.
Finding records
To access records: Contact the Department of Medical Records at the hospital where you were born or gave birth. Ask for information about how to request your records. Typically you will be asked to write a letter requesting your records, with you name, date of the birth, and name of doctor. Request a record of medications taken during pregnancy. Some hospitals keep records for up to thirty years or more. If you know the doctor who took over your obstetrician's practice, or the spouse of the obstetrician, you may ask if your records can be accessed. If you know the pharmacy where your DES was purchased you may request a copy of a prescription. State the approximate dates the prescription would have been filled. For military records write to: National Personnel Records Center, 9700 Page Blvd., St. Louis, MO 63118.
Talking to your family and friends
If you are DES-exposed you may want to talk with members of your family about DES and what you are learning. Talking about DES can help educate and heal. As you talk about DES with physicians, family, and friends you may learn more, feel more confident, and help others. It is estimated that there are 10 million DES mothers, daughters, and sons in the US. By talking about DES, you will begin to meet others who share a history of DES exposure.
DES Daughters
Risks:
- Women exposed to DES in utero (DES Daughters) have a higher incidence of ectopic pregnancy, miscarriage, premature delivery, and increased incidence of abnormal pap smears (dysplasia) and cervical carcinoma in situ.
- DES Daughters are at increased risk for a rare cancer of the vagina or cervix, called clear cell cancer. Approximately one in 1,000 DES Daughters are at risk to develop the cancer, although this number may turn out to be higher as the DES Daughters age. So far, clear cell adenocarcinoma has been found in DES daughters between the ages of seven and 42.
- At this time the upper age limit for the development of the cancer is unknown.
Exams and Check ups:
DES Daughters should have a gynecological exam once a year consisting of:
-Thorough pelvic examination, with careful visual examination
-Cervical Pap test
-Vaginal Pap test taken from all four sides of the vagina (4-quadrant)
-Palpation (manual feeling) of the vagina.

The recommended pelvic exam for a DES daughter is different from a routine women's exam. In the routine exam, the Pap smear is taken only from the cervix. In the DES exam, a separate Pap smear is taken from the surfaces of the upper vagina as well.

The initial DES examination should include: Iodine stain (to indicate abnormal areas of tissue) and colposcopy (use of magnifying instrument to examine cervix/vagina)

Some doctors use a coloposcope routinely, but a colposcopy may be necessary only when there is change in the tissue of cervix or vagina or abnormal pap smear. A biopsy may be performed when there is indication of an abnormal pap test.
DES Sons
Risks:
- Studies show that men exposed to DES in utero (DES Sons) have increased incidence of:
  -Epididymal cysts ( cysts on the ducts behind the testicle)
  -Hypoplastic testicle (underdeveloped testicle)
  -Cryptorchidism (undescended testicle)
- A small number of studies on DES Sons raise questions about low sperm count and poor sperm mobility. Some DES Sons have developed testicular cancer, but research has not established a link to in utero DES exposure.
Exams and Check ups:
DES Sons should practice regular testicular self-exams. They should discuss concerns about DES with their physician and consult a urologist about genitourinary problems.
DES Mothers
Risks:
Women prescribed DES during pregnancy have a slightly increased risk for breast cancer. One study showed a 30% increased risk for breast cancer.
Exams and Check ups:
DES Mothers should follow guidelines for breast cancer screening: Monthly breast self-exam, yearly breast exam by a health care practitioner, and annual mammogram beginning at age 50. An annual gynecologic exam, with Pap smear is recommended.
DES Research
DES research has mainly focused on the effects of DES on the reproductive system of DES Daughters. There has been little research on DES Sons, DES Mothers, the grandchildren (DES Third Generation), or on the effect of DES to the immune, endocrine, skeletal, or cardiovascular systems. Preliminary studies show DES daughters have increased incidence of autoimmune problems. A past decline in DES research means current information on the effects of DES is scant. Fortunately, efforts by DES consumer organizations, working with Congress and the National Institutes of Health (NIH), have brought about renewed commitment to DES research. Major new studies, begun in 1993, are carrying out important programs of DES education and studies on the long term medical effects of DES exposure.

Health Care Guidelines for DES-exposed women and men was adapted from Public Health Recommendations for DES-exposed from: "NIH Workshop on Long-Term Effects of Exposure to Diethylstilbestrol (DES)," published in April 1992. You may obtain a free copy of the NIH publication by calling 1-800-4-CANCER (1-800-422-6237).

The DES Cancer Network is no longer responding directly to email inquiries. If you have a general (non-cancer) DES-related question or concern, please contact DES Action by calling the toll-free information line at 1-800-337-9288 or by sending a message tot desaction@columbus.rr.com. The Web site address is www.desaction.org.

If your question or concern is cancer-related please go the University of Chicago, DES Cancer Registry website at www.obgyn.bsd.uchicago.edu/registry or contact them directly by phone at 1-773-703-6671 or by email at danderso1@babies.bsd.uchicago.edu.

If you need to talk to someone about support for yourself or a family member, the moderators of both of the Web sites above will direct you to a DES-related clear cell cancer survivor.