The term “Previvor” was first coined by an organization called FORCE (Facing our Risk of Cancer Empowered) and describes a person who is a survivor of a predisposition to cancer, meaning they have a higher risk for developing a specific type(s) of cancer, but have not been diagnosed.
This term can apply to an individual who has tested positive for a gene mutation that increases their risk for cancer and/or if the individual has a strong family history of cancer, but a gene mutation has not been identified.
Previvors often have to make challenging decisions regarding their screening and prevention. Angelina Jolie is one of the most famous Previvors, and has been very candid about her decisions as she carries a BRCA1 mutation.
BRCA1 mutations are associated with high risks for breast cancer (46-87%) and ovarian cancer (39-63%), as well as elevated risks for male breast, prostate, and pancreatic cancer. To reduce her risks, Angelina elected to undergo prophylactic bilateral mastectomies (removal of the breasts) and bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes). This is a very personal decision and some women decide to undergo high risk surveillance for their breasts instead. These types of decisions are life-changing.
Individuals may elect to undergo genetic testing for a variety of reasons. Some individuals choose to undergo genetic testing if they know that there are screening methods or preventive options that can be taken to reduce risk and/or prevent a cancer from happening. Fear of cancer may also motivate one to pursue genetic testing, particularly if an individual has seen several family members affected by the disease. Family is often a huge motivator for individuals as some want answers to explain the family history of cancer and/or want the ability to provide information to their families.
Genetic counselors are there to help patients understand their risks for cancer based upon their genetic test results and/or family history, but to also discuss potential risk-reducing strategies or screening recommendations based upon professional guidelines.
If you have questions regarding genetic testing for hereditary cancer syndromes or genetic counseling, please call the ProMedica Cancer Institute’s Cancer Genetics Program at 419-824-5073.
Resources for more information on Previvors:
BrightPink – https://www.brightpink.org/
Sarah Adelsperger, MS, LCGC, is one of only two licensed and board-certified genetic counselors specializing in cancer in northwest Ohio and southeast Michigan. Sarah joined Kelly Morse, MS, LCGC, in the Cancer Genetics Program in May 2015 at ProMedica Cancer Institute.