The concept of a “previvor” is an important modern designation in health care and genetics, capturing the experience of individuals who navigate a significantly elevated risk for a specific disease without having received a diagnosis. This term applies to people who have not developed a life-threatening illness, such as cancer, but are actively taking steps to prevent it. The previvor identity highlights the unique challenges faced when living with the knowledge of a high-risk status, prompting personalized medical management and proactive health decisions.
Defining the Previvor Identity
A previvor is defined as a “survivor of a predisposition to disease”—an individual who possesses a known, substantially increased lifetime risk for a condition but has not yet been diagnosed. This designation was coined around 2000 by the advocacy group Facing Our Risk of Cancer Empowered (FORCE). The status distinguishes these individuals from the general population and from “survivors” who have completed treatment. Unlike those at average risk, previvors have a quantifiable risk that necessitates specialized medical attention and often involves complex, life-altering decisions.
Understanding Genetic and Hereditary Risk
The classification as a previvor stems from the identification of a substantially elevated, often hereditary, risk for a specific disease, most commonly cancer. This increased likelihood is confirmed through genetic testing, which identifies germline mutations—changes in the DNA inherited from a parent—that impair the body’s natural defense mechanisms. These mutations significantly raise the lifetime odds of developing cancer compared to the general population.
A prominent example involves mutations in the BRCA1 and BRCA2 genes, which are tumor suppressors responsible for repairing damaged DNA. For women with a pathogenic BRCA1 or BRCA2 mutation, the lifetime risk of developing breast cancer can exceed 60%, compared to the general population risk of about 13%. Similarly, carriers of Lynch Syndrome mutations, which involve DNA mismatch repair genes like MLH1 and MSH2, face a very high lifetime risk for colorectal and endometrial cancers. The specific mutation dictates the risk level, with some BRCA1 carriers having a lifetime ovarian cancer risk between 39% and 58%, far exceeding the 1.1% risk for the general female population.
Proactive Medical Management
Individuals identified as previvors pursue proactive medical management strategies to mitigate their high disease risk, typically involving enhanced surveillance, chemoprevention, and prophylactic procedures. Enhanced surveillance aims to detect cancer at its earliest, most treatable stages, requiring screening that is more frequent and begins earlier than standard protocols. For instance, women with a high lifetime breast cancer risk, such as BRCA mutation carriers, are advised to begin annual magnetic resonance imaging (MRI) and mammography screenings as early as age 25 to 30.
Chemoprevention and Prophylactic Surgery
Chemoprevention involves using medications to lower the risk of developing certain cancers. For BRCA carriers, selective estrogen receptor modulators (SERMs) or aromatase inhibitors may be prescribed to reduce breast cancer risk. The most definitive risk reduction is achieved through prophylactic surgery, which involves removing the at-risk organ before cancer can develop.
Two common prophylactic procedures are a risk-reducing bilateral mastectomy (lowering breast cancer risk by 90% or more) and a risk-reducing salpingo-oophorectomy (removal of ovaries and fallopian tubes). The salpingo-oophorectomy is often recommended for BRCA carriers between ages 35 and 45 and protects against both ovarian and breast cancer. These surgeries offer a substantial risk reduction and are a complex, personal choice made in consultation with medical teams.