Karen's story
Karen, an 18-year survivor, embraces her ability to live an active life despite some limitations.
You are not alone
Find wisdom, hope, and connection in the stories of others who have faced chordoma.
Our Uncommon Story series is an opportunity for chordoma patients and caregivers to share what they’ve learned during their experience with chordoma, and help you understand what you might expect throughout your own.
The collective wisdom of everyone affected by chordoma is making the path easier for those who come next, and we're grateful to all who have generously and courageously shared their stories here.
Karen, an 18-year survivor, embraces her ability to live an active life despite some limitations.
Finding a medical team with deep expertise in this disease made all the difference.
Today, Joan feels a sense of victory when looking back at her experience with chordoma.
Adjusting to the change of pace brought on by chordoma led Shari to learn how to ask for help.
Chordoma is even more rare in young adults than older adults, and this age group encounters unique challenges when faced with a cancer diagnosis.
We hope you'll find camaraderie in these stories, and encourage you to join our next virtual support group for young adults.
Jessica found support from other young adults who helped her navigate the complexities of a recurrence.
Melissa says it was surreal to be diagnosed with a cancer her doctor had never heard of.
Relying on friends, family, and therapy has helped Carlie cope with the physical and mental challenges of chordoma.
Kaitlin's chordoma diagnosis set her on a career path that she felt destined to pursue.
Thanks to advances in research, improvements in care, and access to more treatment options, more people than ever are living with chordoma for many years — in some cases, multiple decades.
These perspectives from long-term survivors provide plenty of hope and wisdom.
Diagnosed in 1983, his doctors told him he might live another year. Four decades later, Jonathan shares his story.
Lindsay, diagnosed in 2003, has plenty of wisdom to share with fellow survivors on this "bumpy road."
"We are more than our cancer," says Adriane, who was diagnosed with chordoma in 2007.
Diagnosed in 2012, Steven now gives back to the chordoma community in a variety of ways.
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.