There are moments when a single sentence – just a few unexpected words – can upend your entire life. Time seems to stand still, and you can feel your soul shift. There is the before that moment, and the after. For my family, there have been far too many of those moments.
“Some families just have a lot of cancer.”
“You worked with so many carcinogenic chemicals.”
“You live in an area with high breast cancer rates.”
These are all true, and maybe those explanations made sense. But they also didn’t.
My father battled multiple primary cancers during his lifetime. He lost his mother at a young age to cancer, and we later lost my uncle as well. Then, when my sister was diagnosed with Stage IV breast cancer, I found myself sitting in the genetic cancer division at my local breast center, expecting nothing more than a BRCA panel. When they offered a broader genetic test at no cost, I opted for it – never imagining how profoundly that decision would divide my life into before and after.
I still remember the moment my results were delivered – not so much for what they revealed, but for how carelessly the words were spoken.
“You either have leukemia, late-stage cancer somewhere in your body, or a very rare genetic disorder – Li-Fraumeni syndrome. Li-Fraumeni syndrome is so rare we’ve never seen it here before and don’t think that’s what you have. More tests are needed.”
Just like that. No compassion. No guidance. Just fear, handed to me like a diagnosis. And in that instant, I knew I was in the wrong place.
My husband became my anchor – my advocate – tirelessly searching for the right specialists, the right information, the right community. I added the most current recommended cancer surveillance and built a team of doctors who understand and work with Li-Fraumeni syndrome (LFS) families.
This summer, my daughter and I had the privilege of attending the LFSA Youth Workshop in Boston. Sitting among families like ours, surrounded by their strength and resilience, I felt that life-altering shift again – not fear this time, but purpose. Within the Li-Fraumeni Syndrome Association (LFSA), we found people who understood, who listened, who knew this path. LFS isn’t as rare as it once seemed, and every year more families discover that it has been quietly shaping their story too.
As a family, we chose to lean into this community. My husband turned his passion into action, stepping forward as the face of the LFSA Fuel the Fight marathon team. And I chose to share our story openly – because stories spark connection, impart knowledge, and inspire courage.
LFS may shape our path, but it does not define our joy. We have the opportunity to educate and advocate, to use surveillance and science to live longer, fuller, more beautiful lives. As a community, we can lift each other, support one another, and fuel the research that will change the future.
There is always hope. And together, we can carry it forward.
Thanks to the LFSA, my family has found strength, connection, and power through knowledge. Please help make that same lifeline possible for others, supporting the programs, research, and care that guide families through their own before and after.
With heartfelt gratitude,
Jill Kubetz
