Pre-vivors & Survivors
Cancer pre-vivors
Overview
"Cancer pre-vivors" are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer pre-vivor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, "I need a label!" As a result, the term cancer pre-vivor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.
The medical community uses the term "unaffected carrier" to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn't capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer pre-vivors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.
Pre-vivor cancer risk and management
As new research continues, the ability of medical experts to predict and manage breast and ovarian cancer risk will improve. Therefore it is important for cancer pre-vivors to consult with a specialist in cancer genetics when determining risk for breast cancer and making risk-management decisions.
The FORCE website has sections devoted to cancer risk and risk management that apply to breast cancer survivors. You'll find other important information in the following sections:
- assessing risk and genetic counseling
- family history
- genetic testing
- introduction to risk management
- breast and ovarian cancer risks
- chemoprevention and breast cancer
- chemoprevention and ovarian cancer
- close surveillance for breast cancer
- close surveillance for ovarian cancer
- mastectomy
- breast reconstruction
- oophorectomy
- surgical menopause
- finding specialists
- clinical trials and research
- financial help
- insurance and privacy issues
Pre-vivor support
Confronting your personal cancer risk can be confusing and frustrating. If you are a cancer pre-vivor trying to choose the best risk-management option, you need as much information about your personal risk as possible. Sometimes it helps to speak with other women who have faced these choices. Learn more about talking with other high-risk women in our pre-vivor’s support section.[Back to Top]
Promoting "pre-vivorship"
FORCE invites the community to support our Cancer Pre-vivor Campaign.
- Use this term to describe the at-risk population.
- Tell your cancer pre-vivor friends and relatives about FORCE.
- Tell your medical team about FORCE .
- Refer the media to FORCE to improve coverage of our campaign and raise awareness of the unique needs of the pre-vivor community.
Pre-vivor research and clinical trials
- breast cancer chemoprevention clinical trials
- ovarian cancer chemoprevention clinical trials
- breast cancer detection clinical trials
- ovarian cancer detection clinical trials
- oophorectomy clinical trials
Other websites
Be Bright Pink
Organization devoted to support for young women at high risk for breast cancer.
Breast Cancer Legacy DVD, available to purchase from the FORCE shop.
This DVD, sponsored by the Young Survival Coalition, profiles several families dealing with hereditary breast cancer and includes interviews with experts in cancer genetics.
Laurie Stein's Personal Story
Reporter and FORCE member Laurie Stein tells her personal experience with hereditary breast cancer, genetic testing and dealing with the aftermath of learning that she carries a mutation.
Myriad Genetics
Information for consumers and health care providers, including charts of BRCA prevalence, produced by the laboratory that conducts BRCA 1 and BRCA 2 testing.
National Cancer Institute
The National Cancer Institute is a government agency that provides statistics, education and research on all cancer types. The site has a specific section on cancer genetics, with sections devoted entirely to hereditary breast cancer and hereditary ovarian cancer.
Predict
Predict is an interactive CD-ROM product designed to help people learn about BRCA1 and BRCA2 alterations and decide whether to pursue genetic testing.