What do you get when you combine the terms predisposition and survivor? The term previvor. A previvor is an individual who has not had cancer but is at increased risk due to a gene mutation or family history. He or she is a survivor of a predisposition to cancer. According to Sue Friedman, the founder of Facing Our Risk of Cancer Empowered (FORCE), the term originated in 2000 as a result of a challenge on its message board with a poster stating “I need a label!” “As a result, FORCE developed and promoted the term ‘cancer previvor’ for ‘survivor of a predisposition to cancer.’ ”1 The use of the term has continued to grow. In 2007, Time magazine listed it as the number 3 buzzword of the year, and in 2010 the US House of Representatives declared the last Wednesday of September National Previvor Day. This year, that date is September 26. Be sure to check in your community for planned events.
The coining and evolution of the term previvor is one example of the importance of patient support organizations focused on hereditary cancer. Not only do these organizations raise awareness, they also fulfill patient needs that are not met by traditional cancer support organizations. As a genetic counselor, I have lost count of the number of times I have been asked “Where are the people like me?” Previvors often express that they do not fit in at cancer support organizations because they are not survivors, while survivors of hereditary cancer often express frustration because traditional organizations do not have the specific resources they seek. However, for patients to benefit from hereditary cancer organizations, they must first be made aware of them. Below is a list of some of the organizations with a focus on hereditary cancer.
Cowden SyndromeOnline support groups:http://health.groups.yahoo.com/group/cowdensyndrome/http://www.ptenworld.com/
Hereditary Breast and Ovarian Cancer
Bright Pinkhttp://www.brightpink.org/“Bright Pink is a national non-profit organization that provides education and support to young women who are at high risk for breast and ovarian cancer. We arm young women with knowledge, options and a great attitude, and offer companionship and empathy during their journey. We empower them to take control of their breast and ovarian health and in turn, grant them the freedom and peace of mind to live a beautiful and fulfilling life.”
Facing Our Risk of Cancer Empowered (FORCE)http://www.facingourrisk.org/“FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. Our mission includes support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancer. Our programs serve anyone with a BRCA mutation or a family history of cancer.”
Sharsherethttp://www.sharsheret.org/“Sharsheret, Hebrew for ‘chain,’ is a national not-for-profit organization supporting young women and their families, of all Jewish backgrounds, facing breast cancer. Our mission is to offer a community of support to women diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources.”
Familial Adenomatous Polyposis (FAP)FAP Gene Support Grouphttp://www.fapgene.com/
Hereditary Diffuse Gastric CancerNo Stomach for Cancerhttp://www.nostomachforcancer.org/“We advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provide a support network for affected families, and support research efforts for screening, early detection, treatment, and prevention of stomach cancer.”
Li-Fraumeni Syndrome (LFS)Li-Fraumeni Syndrome Association http://www.lfsassociation.org/“LFS Association provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome. We support a consortium of researchers, medical providers and caregivers to further research and promote optimal care for the LFS community.”
Lynch Syndrome/Hereditary Nonpolyposis Colorectal Cancer Colon Cancer Alliance for Research and Education for Lynch Syndrome http://www.fightlynch.org/“Our mission is to educate the public and health care professionals about Lynch syndrome and to help fund research for a cure for this disease.”Lynch Syndrome International http://www.lynchcancers.org/“The primary mission of Lynch Syndrome International (LSI) is to serve our global communities by focusing on providing support for individuals afflicted with Lynch syndrome, creating public awareness of the syndrome, educating members of the general public and health care professionals and providing support for Lynch syndrome research endeavors.”
Multiple Endocrine NeoplasiaAssociation for Multiple Endocrine Neoplasia Disordershttp://www.amend.org.uk/“The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is an international patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumours.”
Peutz-Jeghers Syndrome and Juvenile Polyposis SyndromeOnline support group:http://listserv.acor.org/scripts/ wa-ACOR.exe?A0=PJS
Reference
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