What is a Previvor?
This week is Hereditary Breast and Ovarian Cancer Week. To celebrate and bring awareness, we will be featuring information about hereditary breast and ovarian cancer risk, the Basser Research Center for BRCA1 and BRCA2 and stories from "previvors."
The term “cancer pre-vivor” arose in 2000 from a challenge on the website, FORCE, which stands for “Facing Our Risk of Cancer Empowered.”
Founded by Sue Friedman in 1999, FORCE acts under the principle that nobody should face hereditary cancer alone.
“FORCE’s goal has always been to include all who have been affected by hereditary cancer,” says Friedman. “This includes those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found.
This particular challenge was posed by a FORCE website regular who posted on the site, “I need a label!” She expressed how she had lost her mother to breast cancer at a young age, she lost her breasts, ovaries, and fertility to the risk of cancer, but she did not have cancer. At that time the medical community used the term “unaffected carrier” to describe those who have a gene mutation but have not had cancer.
The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer,” says Friedman. “As a result, FORCE developed and promoted the term ‘cancer previvor’ for ‘survivor of a predisposition to cancer.’”
Previvors have unique needs from people with cancer such as active surveillance, testing and often need to make treatment decisions based on their risk for inherited cancer.
Now, more than a decade later, as we commemorate National Previvor Day, we celebrate the fact that previvorship has grown into more than a label, but an actual movement of real people who are empowered to take charge of their health.
The goal of Hereditary Breast and Ovarian Cancer (HBOC)Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.
The Basser Research Center at Penn Focuses on BRCA1 and BRCA2
The Basser Research Center for BRCA1 and BRCA 2 supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.The Basser Research Center was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.
Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center will contribute to all stages of research and clinical care related to BRCA-related cancers.
Learn more about the Basser Research Center.
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