Every Story Shapes the Future
Behind every synovial sarcoma diagnosis is a person – and a circle of family and friends navigating
treatment, survivorship, or remembrance. These stories create connection, spark advocacy, and reveal
human side of research.
Whether you are in treatment, NED, living with recurrence, supporting someone you love, or honoring
someone you’ve lost – your story belongs here.
Filter Patient Stories By:
MEET PATIENT
Katarina (Katie) Ventus
Diagnosed in July 2021 at the age of 12 after feeling a lump in her left cheek. An x-ray, ultrasound, and MRI at CHOP revealed a mass. A biopsy confirmed it as synovial sarcoma. The 5.5 cm tumor was successfully removed at CHOP by Dr. Ken Kazahaya without nerve damage. Shortly after, Katie began chemotherapy. […]
MEET PATIENT
Beth Primm
Diagnosed with Synovial Sarcoma in December 2016 after a 10 cm tumor was found in her pelvic wall during a routine OB-GYN appointment. Thinking it was a fibroid, surgery was performed to remove it. Upon opening her up, the doctor realized it was more than just a fibroid, took a biopsy, and sewed her back […]
MEET PATIENT
Joey Toro
Joey was officially diagnosed with Synovial Sarcoma on December 23, 2017, after being misdiagnosed twice while experiencing years of worsening hip and abdominal pain that had originally been attributed to old football injuries and other unrelated conditions. While attending the police academy, Joey was hospitalized with severe pain, but even imaging at the time failed […]
MEET PATIENT
Seth Quinn
Seth was diagnosed with Synovial Sarcoma in his left knee in November 2020 after initially being misdiagnosed with a vascular malformation in 2018. Prior to his diagnosis, Seth underwent two embolization procedures in 2018 while searching for answers to his symptoms. Seth participated in a radiation clinical trial at UCLA Medical Center, where he underwent […]
Thank You for Sharing Your Story
Please share any details of your journey that you feel comfortable with. By submitting your story, you allow the
Synovial Sarcoma Foundation to share it across our website, social media, and educational materials to help
support and inform others.
