In this special Previvor Day episode of BRCA & Beyond, Marisa talks about the parts of living with an inherited genetic mutation and hereditary cancer risk that often happen quietly, far beyond genetic testing results, cancer screenings, doctor appointments, and risk percentages.
Because being a previvor can mean making life-changing decisions about a healthy body. It can mean choosing between increased surveillance and risk-reducing surgery, navigating fertility and family planning, worrying about what you may have passed on to your children, carrying the cancer history of generations before you, and learning how to live with information you can never unknow.
And then there is the part we don’t talk about nearly enough: the emotional weight of it all.
In this episode, Marisa gets personal about her own experience as a BRCA2 previvor and colon cancer survivor, including preventive surgery, body image, family history, guilt, grief, fear, gratitude, and the strange gray area of being neither a cancer patient nor completely untouched by cancer.
She also explores why so many previvors struggle silently. When people around you are actively fighting cancer, it can feel like you don’t have the right to say this is hard. When a preventive surgery was technically your “choice,” it can feel like you shouldn’t grieve what it cost you.
But being grateful for the opportunity to know your hereditary cancer risk and struggling with what that knowledge asks of you can both be true.
This episode is for anyone navigating BRCA1, BRCA2, Lynch syndrome, PALB2, CHEK2, ATM, TP53, CDH1, or another hereditary cancer gene mutation. It’s for the person considering preventive surgery, living through high-risk cancer screening, waiting on genetic testing results, thinking about their children and family history, or simply trying to figure out where they belong in the hereditary cancer community.
On Previvor Day, this is a reminder that you do not have to earn the right to find this difficult, and you do not have to carry it quietly.
FORCE: Facing Our Risk of Cancer Empowered
Hereditary cancer information, gene-specific resources, support programs, research opportunities, and resources for previvors and survivors:
https://www.facingourrisk.org/
National Hereditary Cancer Week & Previvor Day – FORCE
Learn more about National Previvor Day and Hereditary Cancer Week:
https://www.facingourrisk.org/national-hereditary-cancer-week
FORCE Previvor Resources
Information and resources specifically for people living with an inherited cancer risk who have not been diagnosed with cancer:
https://www.facingourrisk.org/previvor-resources
FORCE Hereditary Cancer Support
Find peer navigation, previvor support groups, a helpline, community programs, and help finding hereditary cancer specialists:
https://www.facingourrisk.org/support
National Cancer Institute: Genetic Testing for Inherited Cancer Risk
Information about hereditary cancer syndromes, genetic testing, genetic counseling, and what genetic test results can mean for individuals and families:
https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet
This podcast is for educational and informational purposes only and is not a substitute for individualized medical advice. Decisions about genetic testing, cancer screening, surveillance, medications, or risk-reducing surgery should be made with qualified healthcare professionals who understand your personal and family history.
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