Path to Previvor: My Journey from Diagnosis to Advocacy

When I first received my diagnoses of Lynch syndrome and CHEK2, I had no real frame of reference for what it meant in my day-to-day life or how I could take control of my risk. However, this changed when I found the Facing Our Risk of Cancer Empowered (FORCE) website — the realization that I was not alone in this journey opened the door to a wealth of helpful resources and a sense of empowerment.

For anyone navigating hereditary cancer risk, the path for us is far from straightforward. Nevertheless, the support systems available through organizations like FORCE and other online groups can provide deep comfort and relief: from making decisions about surgeries to dealing with medical gaslighting or coping with scanxiety. Add the emotional toll of changing your lifestyle to support risk reduction, and you have a lot to carry. But with this community, I never felt like I had to do it alone.

Together, we ask or give advice, share resources and provide encouragement for the tough days (like facing your next colonoscopy or awaiting biopsy results). This connection has been invaluable — without it, I genuinely don't know how I would have managed all the ups and downs that come with being a previvor.

Living as a previvor presents its own set of concerns, but knowing my genetic risks allows me to approach those challenges with greater preparedness. While I've had my scares since learning about my mutations, each time I've faced a medical concern, I've done so with the understanding that my awareness has likely saved me from a much more challenging future. Being able to identify and manage risks early has given me a profound sense of control over my health that I never thought possible when I first received my diagnosis two years ago.

One of the biggest lessons I've learned since then is the importance of sharing our stories. Early on, I realized that many people felt hesitant or even ashamed to talk about their experience as a previvor. But there's no shame in being proactive about your health. Through my advocacy work and podcast, “The Positive Gene Podcast,” my goal is to help others feel empowered over their hereditary cancer risk. I share with my listeners that we don't have to live in fear of our genetic predisposition — we can make informed decisions, ask tough questions, find uplifting communities and take steps to reduce our risk. There's power in knowledge and even more power in the connections you build with others going through the same thing.

When it comes to navigating hereditary cancer risks, having the right support, education and a bit of resilience really makes a difference. These tools help us feel more in control and proactive, allowing us to manage our risk and still find ways to thrive, even when things feel a bit scary.

I am grateful to have found my previvor community and to have the opportunity to give back by helping others find their voice and feel empowered over their hereditary cancer risk. If you're managing a hereditary cancer risk, talk to your medical team about the resources and screenings available to help you stay proactive in your health journey. If you're unsure of your risk, consider speaking with a genetic counselor to discuss options for testing and prevention.

This story was written and submitted by Sara Kavanaugh. The article reflects the views of Kavanaugh and not of CURE®. This is also not supposed to be intended as medical advice.

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