How Stage 4 Synovial Sarcoma Redefined Julie’s Life
Julie’s life took an unexpected turn in 2014 when she was found to have stage 4 synovial sarcoma, a rare kind of soft tissue cancer often starting in joints and tendons but can also be found in the chest. After a car accident in October 2013, she started to experience persistent chest and back pain. Despite clear initial scans, her discomfort grew. One night, the sensation of a heavy weight on her chest after a run earlier that day prompted an ER visit, leading to a life-changing discovery: a mass in her chest.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Naivety shielded Julie from fear at first. Cancer wasn’t on her radar; she thought medicine could fix it. But the words “stage 4 synovial sarcoma” shattered that illusion. The diagnosis process was long, filled with inconclusive biopsies and overwhelming medical jargon. Eventually, she received clarity: an aggressive, rare cancer.
Julie’s treatment began with intensive chemotherapy, which she describes as the hardest experience of her life. The side effects of this treatment were brutal: relentless fatigue, inability to eat, and emotional isolation. She recalls moments of despair, including from the sheer exhaustion of enduring such pain. Yet, voicing that pain became a release, helping her confront her feelings.
After chemo, surgery loomed. Julie’s tumor, once watermelon-sized, had shrunk but was still substantial. Surgeons removed part of her left lung, the phrenic nerve (a nerve that helps control your breathing by moving the diaphragm), and ribs. Recovery tested her patience; frustration brewed as healing felt slow. Breathing with a paralyzed diaphragm and learning to walk again was daunting, underscoring her evolving identity beyond physical abilities.
Radiation followed, surprisingly bringing lightness. Julie experienced hair loss, and as her hair grew back, so did fragments of her self-image. She found humor even in vulnerability — lying on a table, being tattooed for radiation alignment, while techs chatted about raves.
Life post-treatment for stage 4 synovial sarcoma wasn’t linear. Recurrences came, each time shaking but not breaking her. Julie underwent additional surgeries and CyberKnife radiosurgery. Over the years, regular scans became part of her rhythm, now spaced every six months.
Through it all, the message Julie’s eager to share is simple yet profound: find something to laugh about each day. Laughter, she believes, breathes life into moments shadowed by illness. It’s not just a coping mechanism; it’s a testament to resilience. Connection with others who “get it” has been invaluable, offering both understanding and shared humor.
Watch Julie’s video to learn more regarding:
- How a car accident unveiled her hidden disease.
- The unexpected power of laughter in Julie’s cancer experience.
- Why Julie’s toughest battle wasn’t with treatment but with self-identity.
- How humor and vulnerability helped her reclaim her life.
- From despair to hope: Julie’s authentic take on life after a stage 4 synovial sarcoma diagnosis.
- Name:
- Julie K.
- Age at Diagnosis:
- 23
- Diagnosis:
- Synovial Sarcoma
- Staging:
- Stage 4
- Type:
- High-Grade, Poorly Differentiated, Spindle Cell
- Symptoms:
- Chest and back pain after car accident
- Trouble breathing
- Treatments:
- Chemotherapy
- Surgeries: lung resection, video-assisted thoracoscopic surgery (VATS), neurectomy, rib removal
- Radiation therapy: CyberKnife
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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Julie K., High-Grade Poorly Differentiated Spindle Cell Synovial Sarcoma, Stage 4
Symptoms: Chest and back pain after car accident, trouble breathing
Treatments: Chemotherapy, surgeries (lung resection, video-assisted thoracoscopic surgery or VATS, neurectomy, rib removal), radiation therapy (CyberKnife)
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