Copied from the San Francisco Chronicle online.
Cancer is the second leading cause of death in the United States, after heart disease. Since 1990, the federal Centers for Disease Control and Prevention estimates, 19.9 million cases have been diagnosed.
The CDC projects that about 1.4 million new cases will be diagnosed in the United States in 2005 and that more than 570,000 Americans will die of the disease.
Sarcomas are a class of rare cancers comprising about 1 percent of new adult cases; they are more common in children. Specific types of sarcoma are even rarer. There are fewer than 200 new cases each year of alveolar soft part sarcoma, the type of cancer that Alicia Parlette has.
Rare cancers attract limited funding for research. Researchers have difficulty finding patients to conduct clinical trials. Practicing physicians may come across a sarcoma only a few times in their career, making early diagnosis less certain.
Many organizations offer information on cancers and their treatment, medical centers that specialize in cancer care, and support groups for patients and their families.
Here are several places to start:
National Cancer Institute: A comprehensive Web site provided by the federal government’s principal agency for cancer research. www.cancer.gov
American Cancer Society: A comprehensive Web site with links to many other organizations. www.cancer.org/docroot/home/index.asp
National Comprehensive Cancer Network: A comprehensive Web site sponsored by an alliance of 19 major cancer centers. www.nccn.org
UCSF Cancer Resource Center: A center that supports patients, their families and others with information, research assistance, support groups and workshops. www.cc.ucsf.edu/crc
Sarcoma Alliance: Founded by sarcoma survivors to educate and support patients, their families and friends. www.sarcomaalliance.org
The Alliance Against A.S.P.S.: An advocacy group for people with alveolar soft part sarcoma. www.alveolarspsarcoma.net
Sarcoma Foundation of America: An advocacy group for increased research on treating and curing sarcomas. www.curesarcoma.org
The Wellness Community: A support program in the Bay Area for cancer patients and their families. www.twc-bayarea.org
Commonweal Cancer Help Program: A retreat in Bolinas that provides support for cancer patients while exploring the emotional and spiritual dimensions of cancer. www.commonweal.org
Please add your own resources in the comments section.
Alicia Parlette 