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
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
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:
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
- 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
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
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
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
| WELCOME | NOTICES | DES FAQS | TIMELINE | HEALTH CARE
GUIDELINES | RESOURCES
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 firstname.lastname@example.org.
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
or contact them directly by phone at 1-773-703-6671 or by email at email@example.com.
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.