Although the incidence of the rare cancer, clear cell adenocarcinoma of the cervix/vagina is small in DES daughters (about 1:1,000), the “DES examination” is recommended every year throughout their lives. The reasons are: the usual Pap test may not detect this cancer, this cancer type is aggressive and should be detected early, and there is no known upper age limit for this cancer’s occurrence. To get the best treatment, see a specialist experienced in the care of DES exposed people. (Specialist listing at blog article 11/2/09)
The DES examination is similar to the Pap test procedure, but the differences are important. It involves:
- A careful visual inspection and palpation (feeling) of the entire vagina.
- Separate Pap smears from around the outside of the cervix and from the entire upper vaginal walls (4-quadrant smears).
- An internal pelvic examination.
This examination may also include iodine staining of the vagina and cervix (normal tissue stains brown). Depending on the results of these tests, further procedures may be necessary, such as colposcopy and biopsy. At your first DES examination, your specialist may consider a colposcopy to be a good idea in providing a baseline for future management.
NOTE: A colposcopy is done with a colposcope, a device that works like a magnifying glass. It is placed on a stand between you and the doctor and does not enter your body. A biopsy is when a small piece of tissue is removed for study under a microscope.
DES daughters who have annual DES examinations can safely forgo the recommended two yearly Pap test as for the general population. In 2008, a US study of 3,140 DES exposed women showed, astonishingly, that a third of these women are not receiving their recommended annual DES examinations.
More information is at www.desaction.org/paptest.htm