The term “previvor” describes an individual who has not been diagnosed with cancer but has a significantly elevated lifetime risk of developing the disease due to a strong hereditary predisposition. This modern health concept centers on proactive health management, differentiating it from traditional cancer survivorship. For a person to be considered a previvor, their risk must be documented and typically confirmed through genetic testing, not merely based on general lifestyle factors. Previvorship acknowledges the unique psychological and medical journey of living with the knowledge of high risk and taking concrete steps to prevent a future diagnosis.
Defining the Previvor Identity
A previvor is defined as a person who is a “survivor of a predisposition,” meaning they carry a high-risk genetic mutation or have an extremely strong family history but remain cancer-free. This designation was coined to provide a sense of identity and community for people facing this particular health challenge, differentiating them from cancer survivors who have already received a diagnosis and treatment.
The identity encompasses the considerable emotional weight that comes with this knowledge. Individuals often experience high levels of anxiety, especially around medical appointments and screening results. Living in this state of uncertainty means that previvors are deeply affected by their genetic status, even without a diagnosis. The term legitimizes the experience of navigating complex medical decisions and the emotional burden of potential future illness.
Identifying the Genetic Risk
The status of previvor is established by identifying specific, inherited genetic mutations that disrupt the body’s natural tumor suppression mechanisms. The process begins with a detailed assessment of family history, looking for patterns of early-onset cancers or multiple related diagnoses across generations. Genetic counseling then helps determine the likelihood of an inherited cancer syndrome and guides the decision to pursue testing.
The most well-known mutations are in the BRCA1 and BRCA2 genes, which increase the lifetime risk for breast, ovarian, and other cancers. Another common hereditary condition is Lynch syndrome, which involves mutations in genes such as MLH1, MSH2, MSH6, and PMS2, leading to a high risk for colorectal, uterine, and other cancers. Confirmation of one of these mutations solidifies the previvor status and informs the next steps in risk management.
Proactive Risk Reduction Measures
Once a high genetic risk is confirmed, previvors work with specialized medical teams to develop a proactive strategy involving three main categories of action. These interventions are designed to detect cancer at its earliest stage or significantly lower the probability of the cancer developing.
Enhanced Surveillance
Enhanced surveillance involves more frequent and specialized screenings than those recommended for the general population. For BRCA1/2 carriers, this often means alternating annual mammograms with annual breast magnetic resonance imaging (MRI) starting at a younger age. For those with Lynch syndrome, this includes more frequent colonoscopies, sometimes starting in their 20s, to monitor for polyps.
Chemoprevention
Chemoprevention involves using certain medications to reduce cancer risk. For instance, women at high risk for breast cancer may be prescribed medications such as tamoxifen or raloxifene. These medications work by blocking estrogen’s effect on breast tissue, but they must be weighed against potential side effects.
Prophylactic Surgery
The most aggressive measure is prophylactic surgery, which involves removing at-risk organs before cancer can develop. A risk-reducing bilateral mastectomy (removal of both breasts) can reduce breast cancer risk by about 90% in BRCA1/2 carriers. Similarly, a risk-reducing salpingo-oophorectomy (removal of the ovaries and fallopian tubes) is recommended for BRCA1/2 carriers after childbearing, as it can reduce ovarian cancer risk by 80% to 96% and breast cancer risk by about 50%.