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DES mothers

DES Mothers includes women who took DES during pregnancy, but you are also in this group if you were prescribed DES for reasons other than during pregnancy, or if your pregnancy was not successful.

What does DES exposure mean for DES mothers?

Women who took DES have a slightly increased risk of breast cancer.

DES mothers may experience emotional responses which are difficult to deal with. It is not unusual for mothers to feel an understandable, but misplaced, sense of guilt for the problems that their daughters could face. Counselling as well as informed listening may often be extremely helpful. It is valuable for mothers to be able to discuss their feelings not only with their daughters, but also with other mothers.

What should DES mothers do?

• Examine your breasts regularly and have regular breast cancer screening.
• Be cautious about using Hormone Replacement Therapy (HRT).
• Some doctors believe the carcinogenic effects of hormones may be cumulative. (See DES: physical issues)

Case Study

Mary discovered the cancer when she had just given birth to her first child.

In the maternity ward at the time, the vigilant consultant gynaecologist told her what he had found and that she would need immediate surgery to save the cancer from spreading.

Mary’s view, now after nearly fifteen years have passed, is that she is delighted that it was discovered, and she now finds that offering support to other women gives her a sense of achievement. Mary knew that she was not alone and that others were affected, but it took almost ten years to find other women who also had clear cell vaginal cancer and had had a radical hysterectomy. She regularly speaks to others in the UK and in Holland where there is a strong support group.

Mary and her husband have adapted to the trauma which they have experienced and both are now able to cope. However, it took many years, and has been more manageable since they have found others in a comparable position to themselves. Mary still attends the same local hospital in which she had her child in order to receive an annual check up. She still gets nervous about the check a few days before but feels a fantastic sense of relief once it is done and she has been given the all clear.

A group of women who have been identified with, and cured of, CCA cancer are available to give support to others.
See Resources and links for details.

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SOME OF THE INFORMATION ON THESE PAGES HAS NOW BEEN SUPERSEDED

Written by Michelle Cowen, DES Action UK
and published in printed format (1998) by Women's Health

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