The DES Cancer Network

[Guest guest]

http://www.descancer.org/

 

 

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. As of January 1997, approximately

680 women in the United States were registered as having had this cancer.

 

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 providing 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.

WELCOME | NOTICES | DES FAQS | TIMELINE | HEALTH CARE GUIDELINES | RESOURCES

 

 

The DES Cancer Network

514 10th Street, NW, Suite 400

Washington, DC 20004-1403

Phone: (800) DES-NET4 or (202) 628-6330

Fax: (202) 628-6217

DESNETWRK

 

 

 

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