When I was 26, my cousin—my same age—died of synovial sarcoma. She was 25.
I found out right after walking out of the MCAT. At the time, I didn’t fully process what it meant for me—but looking back, it changed the course of my life.
That was the summer I didn’t seriously apply to medical school.
It’s also one of the biggest reasons I’m pursuing a career in healthcare now.
As I’ve been working in the OR and preparing for a path toward becoming a surgical PA, I’ve come back to synovial sarcoma—not just as something to study, but as something I want to understand.
What is synovial sarcoma?
Synovial sarcoma is a rare cancer and an uncommon type of soft tissue sarcoma, making up approximately 5–10% of all soft tissue cancers [3, 5, 6, 9]. It affects about 1,000 people in the United States each year [1, 9, 10].
Soft tissue sarcomas arise in the connective tissues of the body [1]. Although synovial sarcoma is often found near joints—especially in the arms, legs, shoulders, and hips—it can occur almost anywhere in the body [1]. The name comes from the fact that the cancer cells resemble those found in synovial tissue, though it is not limited to joints [1].
This disease most commonly affects adolescents and young adults [1, 3, 7, 9].
Outcomes can be poor. Five-year survival rates can be as low as 36%, and ten-year survival rates around 20% [3]. Prognosis improves when the tumor is smaller or when diagnosis occurs at a younger age [3].
Molecular basis and genetics
At its core, synovial sarcoma is a disease of genetic change.
Cells accumulate alterations in DNA—sometimes from environmental exposures, sometimes from random mutation. Normally, cells detect and repair these errors. When they can’t, abnormal growth can occur, eventually forming a tumor that can invade surrounding tissues and spread to other organs.
Synovial sarcoma is characterized by a specific chromosomal translocation: the SSX gene on the X chromosome fuses with the SYT gene on chromosome 18. This creates the SYT-SSX fusion transcription [3].
The resulting protein retains nearly all of the SYT amino acids, with only the final eight replaced by 78 amino acids from SSX [3]. While the exact function is still being studied, SSX appears to play a role in repressing other transcription processes [3, 5].
Detection and treatment challenges
One of the biggest challenges with synovial sarcoma is that it often presents with minimal symptoms early on.
Patients may notice a slow-growing mass, but pain, stiffness, or functional limitations may not develop until later. Because of this, diagnosis often occurs after metastasis—most commonly to the lungs or liver [6, 9].
Screening is not currently practical. The disease is rare, and early detection strategies have limited yield at a population level.
When diagnosed, surgery is typically the primary treatment [1, 6, 8, 9]. This often involves removing the tumor along with surrounding structures in an “en bloc” resection [6].
In more extensive cases—especially in the abdomen—this can mean removing portions of or entire organs, including the bladder, colon, uterus, liver, kidneys, ureters, and associated musculature.
Radiation therapy and chemotherapy may be used before or after surgery to shrink tumors or eliminate residual cancer cells [9]. Outcomes tend to be better in younger patients and when the disease is detected early.
Because most patients are diagnosed before age 30 [10], synovial sarcoma carries a significant societal burden in terms of years of potential life lost.
Where things are heading
Research continues to focus on understanding the role of different SYT-SSX fusion variants, which may help improve diagnostic precision and prognostic accuracy [5].
In 2024, the FDA approved the first gene therapy for adults with metastatic synovial sarcoma [10].
This therapy—afamitresgene autoleucel (Tecelra)—uses a T-cell receptor approach. A patient’s T cells are collected, genetically modified to target specific tumor antigens, and then reintroduced into the body to attack cancer cells.
It is not a perfect solution. But it represents a meaningful shift.
For decades, many cancer treatments have relied on pushing the body to its limits in an effort to destroy malignant cells. This approach, instead, leverages the body’s own adaptive immune system.
Why this matters to me
Writing this wasn’t just an academic exercise.
When my cousin died of synovial sarcoma, I didn’t really understand what it meant medically. I just knew it was rare and aggressive—and that it took her quickly.
Now, working in the OR and preparing for a career as a surgical PA, I’m in a position to understand those things in a way I couldn’t before.
That matters to me.
It’s part of why I’m pursuing this path—to understand diseases like this more deeply, and to be involved in care that has the potential to change outcomes, even in difficult cases.
References
- Cleveland Clinic. (2024). Synovial sarcoma.
https://my.clevelandclinic.org/health/diseases/22012-synovial-sarcoma - Gardner, J. (2018, April 19). Synovial sarcoma explained by a soft tissue pathologist [Video]. YouTube. https://www.youtube.com/watch?v=ERUfTHO1iZM
- Haldar, M., Randall, R. L., & Capecchi, M. R. (2008). Synovial sarcoma: from genetics to genetic-based animal modeling. Clinical Orthopaedics and Related Research, 466(9), 2156–2167. https://doi.org/10.1007/s11999-008-0340-2
- Jones, K. B., Barrott, J. J., Xie, M., Jin, H., Zhu, J. F., Monument, M. J., Mosbruger, T., Langer, E. M., Randall, R. L., Wilson, R. K., & Cairns, B. R. (2016). The impact of chromosomal translocation locus and fusion oncogene coding sequence in synovial sarcomagenesis. Oncogene, 35(38), 5021–5032.
https://doi.org/10.1038/onc.2016.38 - Kawai, A., Woodruff, J., Healey, J. H., Brennan, M. F., Antonescu, C. R., & Ladanyi, M. (1998). SYT-SSX gene fusion as a determinant of morphology and prognosis in synovial sarcoma. The New England Journal of Medicine, 338(3), 153–160.
https://doi.org/10.1056/NEJM199801153380303 - Mastoraki, A., Schizas, D., Papanikolaou, I. S., Bagias, G., Machairas, N., Argiropoulos, T., & Arkadopoulos, N. (2019). Management of primary retroperitoneal synovial sarcoma: A case report and review of the literature. World Journal of Gastrointestinal Surgery, 11(3), 27–35.
https://doi.org/10.4240/wjgs.v11.i3.27 - Mayo Clinic. (n.d.). Synovial sarcoma.
https://www.mayoclinic.org/diseases-conditions/synovial-sarcoma/symptoms-causes/syc-20577380 - Mayo Clinic. (n.d.). Synovial sarcoma: Diagnosis and treatment.
https://www.mayoclinic.org/diseases-conditions/synovial-sarcoma/diagnosis-treatment/drc-20577401 - National Cancer Institute. (n.d.). Synovial sarcoma.
https://www.cancer.gov/types/soft-tissue-sarcoma/patient/adult-soft-tissue-treatment-pdq#_96 - U.S. Food and Drug Administration. (2024, August 2). FDA approves first gene therapy to treat adults with metastatic synovial sarcoma.
https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapy-treat-adults-metastatic-synovial-sarcoma