DES Cancer Network

The DES Cancer Network is an organization that addresses the special needs of women who have had clear cell adenocarcinoma of the vagina and/or cervix – a cancer linked to exposure to DES before birth. Current statistics indicate that 746 women in the United States are registered as having had this cancer, 62% of whom were DES-exposed in utero.

The idea for a Cancer Network began when two women who had had clear cell cancer met one another, many years after their treatment. They wished that other recovered patients would have the opportunity to meet and communicate freely about their experience.

The DCN has a board of DES daughters. All have been touched by an experience with clear cell adenocarcinoma.

The DCN is an international support system that gives members access to one another and to information about clear cell cancer. Membership is available to any individual interested in participating in the work of the DES Cancer Network. The primary goals of DCN are:

  • Contact
    The DCN’s patient-to-patient exchange is made up of women who have had clear cell cancer of the vagina and/or cervix. With permission of the individual, names, addresses, and phone numbers are exchanged with other members for the purpose of meeting and correspondence. It is not necessary to have proof of DES exposure to be a part of the DCN.

  • Human Concerns
    By identifying common emotional and sexual concerns the DES Cancer Network aims to alleviate feelings of fear and isolation that many patients experience. Informal counseling and peer support is a natural outcome of membership contact. Members of the DCN do not assume the role of a professional therapist.

  • Medical concerns
    Ongoing health problems and concerns about health are addressed through the DCN. Information about clear cell cancer is made available. Research about the cancer, its treatment, and long term effects is encouraged. The DCN has a close working relationship with Dr. Arthur Herbst and the registry for clear cell cancer at the University of Chicago. They are available to provide information for individuals seeking medical advice and treatment.

  • Education
    Education of the patient, the general public, and health care professionals about clear cell cancer is provided by the DES Cancer Network to aid in the early diagnosis, treatment, and overall recovery of patients. The DES Cancer Network newsletter is published twice a year. The newsletter features personal and health related articles, letters and DCN news.

The mission of the DES Cancer Network is to provide recovered patients with ways to contact one another and to support new patients who have been diagnosed or are undergoing treatment.

The DCN is also a support group to the family and friends of DES daughters who are clear cell cancer survivors as well as those who have lost loved ones to the disease. In addition, we serve as a resource to health care professionals and attorneys whose patients/clients have had clear cell cancer.

The DES Cancer Network is a non-profit, tax-exempt organization supported solely by donations. Your gift is a welcome contribution.

Why do women who have had this cancer need their own organization?

The situation of DES daughters who have clear cell cancer deserves special attention because:

  • Few people have had DES related cancer. It is unlikely that patients will meet one another by chance. Contact with other recovered patients (whether one's cancer was diagnosed 1 or 25 years ago) has proved to be a valuable part of healing.

  • The cancer affects the most private aspects of a woman's life. Sexual concerns are highlighted for the woman recovering from DES cancer. -- The cancer and its treatment is unprecedented among younger women. It is not known at this point if there is an age at which DES daughters will be risk-free.

  • Patients are coping with circumstances that few people have ever experienced. A central resource of information and support provides a forum for the free expression of questions and concerns.

  • Material that offers insight into the experience of clear cell cancer is scarce. Family and friends, as well as health care professionals, welcome information that outlines common concerns of recovered patients.

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.