What Is a Previvor? Living with Cancer Risk and Exploring the Options

What Is a Previvor, and Why Does It Matter?

Cancer affects millions of people worldwide, but some individuals have a higher genetic risk. The term "previvor" describes someone who has not developed cancer but carries an inherited mutation and is therefore at high risk. Introduced in 2000 by FORCE (Facing Our Risk of Cancer Empowered), the term aims to raise awareness among genetically predisposed individuals and help them make informed decisions about protecting their health.

The word "previvor" combines "predisposition" and "survivor." While "survivor" refers to someone who has lived through cancer, "previvor" describes someone who has not developed it but is at risk for genetic or familial reasons. More than a medical label, the term encourages people at high risk to take an active role in their health journey.

Previvors have various medical options for managing cancer risk. This article explores who previvors are, which genetic mutations create risk, and what steps can reduce that risk.

Who Is a Previvor?

A previvor is someone at risk of developing cancer who has not yet been diagnosed. This may include:

• People carrying inherited BRCA1, BRCA2, PALB2, or other mutations.

• People with a strong family history of breast, ovarian, or other cancers whose genetic test result is negative.

• People with other genetic syndromes that increase cancer risk.

Healthcare professionals previously described previvors as "unaffected carriers." However, this wording did not adequately capture the psychological and medical challenges many faced. FORCE's introduction of "previvor" helped this community come together and make its voice heard.

Genetic Mutations and Cancer Risk

Genetic testing can help people understand their risk of specific cancers. Some common gene mutations, particularly associated with breast and ovarian cancer, include:

• BRCA1 and BRCA2:

  • Breast cancer risk in women: over 60%

  • Ovarian cancer risk: 39-58% for BRCA1, 13-29% for BRCA2

  • Breast cancer risk in men: 0.2-1.2% for BRCA1, 2-7% for BRCA2

  • They may also increase pancreatic and prostate cancer risk.

• PALB2: May increase breast cancer risk similarly to BRCA genes.

• CHEK2, ATM, TP53, PTEN, and others: Have been associated with breast and other cancers.

Ways to Manage Cancer Risk

Previvors have several options for managing their cancer risk:

1. Enhanced Screening Programs

   • Annual mammography and breast MRI are recommended from age 30.

   • Pelvic examinations and ultrasound monitoring may be used in people at risk of ovarian cancer.

2. Risk-Reducing Medicines and Lifestyle Changes

   • Medicines such as tamoxifen and raloxifene can reduce breast cancer risk.

   • Lifestyle measures such as healthy eating, regular exercise, and avoiding smoking/alcohol also play an important role.

3. Preventive Surgery

   • Mastectomy (Breast Removal): Can reduce breast cancer risk by more than 90%.

   • Salpingo-Oophorectomy (Removal of the Ovaries and Fallopian Tubes): Can substantially reduce ovarian cancer risk but may cause early menopause.

Genetic Testing and Counseling

Genetic testing is critical for identifying cancer predisposition. However, genetic counseling is essential for understanding results and choosing appropriate precautions. Genetic counselors explain what results mean and help people select the most suitable risk-management strategy.

Support and Community Resources for Previvors

Living with a high cancer risk can be challenging emotionally and psychologically as well as physically. Support groups and resources are therefore very important. Organizations such as FORCE and Living Beyond Breast Cancer (LBBC) run programs to support people with genetic risk, raise awareness, and share scientific developments.

Conclusion

Previvors are an important group in cancer prevention. Genetic testing can identify high-risk individuals who can take early action to protect their health. Screening, lifestyle changes, and surgery can help protect them from cancer. Raising awareness of the previvor concept and strengthening support for this community are important steps in addressing cancer.

Remember, knowledge is power! If you believe cancer predisposition runs in your family, consider discussing your personal risk with a genetic counselor.