by Ann Boyer
[Eds. note: This ongoing new feature in Feminist Collections suggests and evaluates key websites on particular topics..]
As you might expect, a multitude of World Wide Web sites deal with aspects of breast cancer. I've chosen sites that exemplify various types of home pages. We begin with a look at a large comprehensive site (meta-site), an excellent starting point for finding both patient-oriented and clinically-oriented materials.
Maintained by University of Pennsylvania Cancer Center
Last update: January 2, 1997
Reviewed: January 3,1997
OncoLink is sponsored by the University of Pennsylvania Cancer Center, with the goal of educating health care personnel, patients, and others. Although OncoLink is partly funded by a large drug company, it does not appear biased. Editors are M.D.s, backed by an editorial board of oncologists. The breast cancer section (http://oncolink. upenn.edu/disease/breast/) has recent press reports on the oncogene BRCA1; journal citations from the national database CANCERLIT; material on psychosocial aspects of the disease (personal accounts, art, poetry); book reviews; links to support organizations; information on the causes, screening, diagnosis and prevention of breast cancer (FDA warnings, NCI Fact Sheets, text produced by OncoLink's team); and breast cancer therapies (slides, FDA updates, audits of clinical protocols, a bone marrow donor database, and clinical trial notifications). As large as it is, OncoLink is well-designed and simple to navigate. Another high-quality meta-site is CancerNet (http://wwwicic.nci.nih. gov:80/). Mounted by the National Cancer Institute and frequently updated, it offers a rich variety of government information sources, useful to both health professionals and lay users.
Breast Cancer Information Clearinghouse
Maintained by New York State Education and Research Network
Last update: week of January 5, l997
Reviewed: January 11,1997
This well-conceived large site provides information to breast cancer patients and their families, with a small section geared to health professionals. NYSERNET is a nonprofit organization in New York State. Information is provided by a partnership of fourteen organizations including the American Cancer Society, Columbia-Presbyterian Medical Center, the National Alliance of Breast Cancer Organizations, and a chapter of the Susan G. Komen Breast Cancer Foundation. A subject index and an internal search engine allow homing in on a topic. Links connect to cancer listservs and gophers as well as to regional support groups. There are a Q&A section, information on conferences and legislation, 800 numbers and hotlines. The designers include considerable background information on the site itself. This is one of the strongest of the many women's self-help pages. For a worthwhile, eclectic, medium-sized self-help page, visit also the Feminist Internet Gateway:Breast Cancer Resources (http://www. feminist.org/other/bc/bcinter1.html).
Breast Cancer Lighthouse
Maintained by Communication Technology Labratory, MSU
Last update: not available
Reviewed: January 7, 1997
This smallish site, sponsored by the Michigan State University Cancer Center and its Communication Technology Laboratory, is one of the more imaginative self-help pages. Aimed at women diagnosed with breast cancer, it provides fairly detailed information about Ductal Carcinoma in Situ and invasive cancer, along with interviews with a number of breast cancer survivors. The intent is to create an intimate, friendly experience for the viewer. The lighthouse/island motif is enhanced by voice audio, pictures, and environmental sounds. The creators have made good use of the web's multimedia capabilities. The resulting admixture of medical information with personal stories and aesthetics will appeal to some women, but not all.
National Breast Cancer Coalition
Maintained by Webmaster, Calibre Systems, Inc
Last update: September 5, 1996
Reviewed: January 7, 1997
This is a politically-oriented women's health advocacy group site; some such sites include medical information while others do not. The Washington-based Coalition describes itself as a grassroots organization with a mission to help eradicate breast cancer via action and political advocacy. This small site outlines the Coalition's goals and initiatives and solicits contributions and memberships. Its style is vigorous and activist.
CLINICALLY-ORIENTED SITE OF LIMITED SCOPE
Maintained by William H. Wolberg, M.D.
Last updated: January 6, 1997
Reviewed: January 11, 1997
Dr. Wolberg is a professor of Surgery and Human Oncology at the University of Wisconsin-Madison. This page was created for use by medical students and by residents studying for board exams. It could serve as a chapter in a virtual medical textbook. The page reviews current knowledge about breast cancer and related topics: breast anatomy, physiology and examination, differential diagnosis and cancer types, screening and risk, postmenopausal hormone replacement, genetic considerations, diagnosis and prognosis, surgery, and adjunctive chemotherapy. A Breast Problem Clinic has been added for lay viewers. The text offers links to photomicrographs, full-text articles, National Cancer Institute Recommendations, etc. It's a good example of hypertext being used to enrich instruction, letting the viewer click to pictures, references, and background data, then back to the text.
SMALL, HIGHLY PERSONAL SITES
with Breast Cancer (illustrated) by Patricia Murray
Maintained by Patricia Murray
Last updated: July 1996
Reviewed: January 13, 1997
URL changed Dec. 22, 1999
Patricia Murray narrates her experiences with mastectomy and breast reconstruction, documenting it with photos. This self-revelatory narrative is down-to-earth, well-organized, and written with warmth and a light touch. For a site that confronts cancer with humor, visit Cancer Comics - The Humor of the Tumor: http://oncolink.upenn.edu/ psychosocial/c-comics/. Yet another site worth visiting is Matuschka: http://www.itp.tsoa.nyu.edu/~student/pincushion/FORUMHTML/cushion1.html. Matuschka is a model, photographer, breast cancer survivor and cancer activist. See her strong photographic self-portraits and thought-provoking explication.
While the aforementioned represent some of the major types of breast cancer websites, you will discover others in your web travels. New sites are constantly appearing, and old ones frequently evolve.
[Ann Boyer, M.A., M.S., is a Reference Librarian at the University of Wisconsin-Madison Health Sciences Libraries. She maintains the Women's Health section of HealthWeb, a collaboration among medical school librarians to offer pointers to qualitative websites. The URL for the Women's Health Page is: http://www.biostat.wisc.edu/chslib/hw/womens/]
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