Surviving with Synovial Sarcoma takes many forms as treatments vary. The profiles below were provided voluntarily by members of our Synovial Sarcoma Families Face Book Page who are currently NED (no evidence of disease) to help bring awareness

Callan DeLeon Spence - Austin TX - 16 y/o

Diagnosed in Jan 2022 at the age of 16 after right lung collapse. The tumor was 16 cm in the mediastinal region and 'initially' considered "inoperable" Synovial Sarcoma by 3 cancer centers. Callan started AIM within 2 weeks of diagnosis and his treatment was transferred to CHOP under the care of Dr. Theodore Laetsch, where he continued AIM Chemotherapy, Proton Radiation from Dr. Kristine Hill-Kayser and successful R0 tumor surgical resection by Drs. Stephanie Fuller & Peter Mattei. The 10-hour surgery included upper right lung lobe removal, 6" graft subclavian artery graft, vagus nerve, phrenic nerve and jugular vein removal . Callan is currently NED and returns to CHOP each quarter for scans. You can find out more about Callan's journey by visiting: Callan's Crew

Haley Alexis Rineer - Philadelphia PA - 25 y/o

Diagnosed in May 2022 at age 24 after struggling with severe back pain and trouble breathing. The tumor was 13 cm taking over the bottom left lung lobe, and pressing up against the heart, and diagram. Dr. Singhal at Penn Hospital was confident enough to operate after a MRI of the heart. On June 6th, Dr. Singhal and team successfully removed the tumor, as well as the left lower lobe, a part of the diagram, and a piece of the pericardium. After receiving news that the margins were clear and the surgery was successful, she underwent 5 rounds of AIM. Haley is currently NED.

Andrew Thomas McNichols - Alexandria, KY - 37 y/o

Diagnosed in November 2021 at age 36 after struggling with severe neck pain and noticing a palpable lump. The Synovial Sarcoma tumor was 5 cm at the base of his skull. Dr. Yash Patil with UC Health successfully removed the tumor, as well as some of the skull and surrounding musculature. After receiving news that the margins were clear and the surgery was successful, he underwent 7 weeks of radiation. Andrew is currently NED and continues to be closely monitored by his team at UC Health.

Ciara Husing - Abilene, TX - 8 y/o

Diagnosed with Synovial Sarcoma in left knee in August 2018 at the age of 8 years old. She was misdiagnosed by multiple physicians for 2 years. A local surgeon agreed to remove the 3cm tumor and biopsy revealed Synovial Sarcoma with positive surgical margins. Her tumor was superficially located directly on top of her patella tendon but the positive margins extended into the proximal tibia and patella tendon. After visiting multiple hospitals across the US, a surgeon (Dr Chappie Conrad III) reached out with a solution to avoid amputation of Ciara’s leg. On 10/16/18 Ciara had a radical limb-salvage operation which included surgically closing one of her growth plates, patellar tendon resection with donor allograft reconstruction along with a proximal tibia allograft. She has been NED since 10/16/18.

Katarina (Katie) Ventus - Philadelphia, PA - 12 y/o

Diagnosed in July of 2021 at the age of 12 after feeling a lump in her left cheek. She had an x-ray an ultrasound, followed by an MRI at CHOP . After discovering a mass, Katie had a biopsy done and it was eventually determined to be synovial sarcoma. The tumor was 5.5 cm. Three weeks later, the tumor was successfully removed at CHOP by Dr. Ken Kazahaya without nerve damage. Shortly after, Katie began chemotherapy. Her doctors are oncologist Vandana Batra and pediatric specialist Timothy Spear. In the middle of her chemo treatment, she did 6 weeks of proton radiation lead by Dr. Kristine Hill-Kayser. Katie has been NED since February of 2022.

Jena Tracey, 36 Haddonfield, NJ

Diagnosed in July of 2021, after discovering a cyst like bump behind her left knee, assuming it was a simple sports related injury. After a month of testing, scans, and finally a biopsy, it was confirmed that she had a 7cm Synovial Sarcoma. It was localized and had not spread, and after multiple opinions, decided on treatment at Thomas Jefferson University Hospital in Philadelphia with Dr. Basu Mallick, which included 6 rounds of AIM Chemo Therapy, 25 Rounds of Radiation followed by successful 'R0' Limb Sparing Surgery with Nerve/Vein grafts with Rothman Orthopedics with Dr. John Abraham. Jena is currently NED as of March of 2022.

Steven Moreda – Cressey, CA – 37 y/o

Diagnosed with Synovial Sarcoma in right arm growing into his median nerve November 2002 at age 37. A 5cm tumor was removed at a local hospital after being assured it was a 'fluid filled benign cyst'. Unfortunately, pathology determined it was SS. We went to MD Anderson and received treatment locally at Memorial Hospital. 6 rounds of AIM Chemo therapy, followed up with 8 weeks of radiation therapy. In 2006 he had recurrence of Synovial Sarcoma in the same location. He was treated at UCSF by thoracic oncologist, Dr. Thierry Jahan and orthopedic oncologist, Dr. Richard O’Donnell who performed his resection. During the 8-hour surgery, Dr. O’Donnell removed the entire section of median nerve with tumor. UCSF Neurosurgeon, Dr. Nicholas Barbaro, performed a nerve graft attempting to repair his median nerve. Treatment of recurrence consisted of IORT, 4 cycles of Ifosfamide and Mesna inpatient, at Memorial Hospital. He continues to see Dr. O’Donnell at UCSF yearly and remains NED since 2007, 16.5 years!

Lisa Obrien - Bay Area, CA - 49 y/o

Diagnosed with Synovial Sarcoma of the lower middle left lung lobe 4.8cm April 2020. She had zero symptoms and tumor was found by accident. Lower left lobe removed through Northern Kaiser California thoracic surgeon Dr Jeffrey Velotta (not a sarcoma specialist as she didn’t know it was SS at that time) in May 2020. She chose not to have the biopsy before surgery and have the tumor removed straight and only later found out it was Synovial Sarcoma. Lisa had 2 more opinions through Dr Kristen Ganjoo at Standford and Dr Gina D’Amato at Sylvester Cancer Centre Miami who she follows up with after each scan 4 month scan. Surgery was considered RO with clear margins and no sign of metastatic spread. While a 4mm nodule is visible in upper left lobe, it remains stable. Lisa completed only 2 rounds of adjuvant AIM chemotherapy as her body did not cope. Considered NED since May 2020.

Judy Owen Walker - Colorado Springs, CO - 39 y/o

Originally misdiagnosed as having small cell osteosarcoma, 5 + cm. high grade tumor found in left thigh had invaded femur. Completed 4 rounds of high dose doxorubicin (outpatient) and 4 doses of Intra-arterial cisplatin (inpatient). Limb sparing surgery with allograft with tumor removal in June 2009 with clear margins but not enough necrosis to tumor. Post surgery completed 9 rounds of both high dose methotrexate (outpatient) and high dose ifosfamide (inpatient). Completed treatment in May 2010. NED until 2013 with one tumor in right lung. R lung Lobectomy; clear margins. NED until 2015 with one tumor in left lung. Segmentectomy of L lung; clear margins. 2016 tumor on r. Adrenal. Adrenalectomy without clear margins. IMRT radiation 5 rounds. NED until 2018 right kidney tumor surgery to remove tumor; not clear margins. 2020 right kidney removal with clear margins. NED since December 2020 as of September 2023 and now 54 years old.

Christian - Europe

Diagnosed in Jan 2022 at the age of 32 after almost three years of intermitting but steadily worsening pain in his left shoulder. The symptoms were misdiagnosed as shoulder impingement, bursitis and ganglion cyst by several physicians. A „whoops surgery“ had already been scheduled but after two failed aspiration attempts for the supposed cyst a visible lump grew quickly and the 6cm tumor was diagnosed at a sarcoma center. The tumor, located between shoulder joint and collarbone, was removed after neoadjuvant AIM chemotherapy and radiation therapy which had shrunk it down to 3.5cm. Margins were clear and two reconstruction surgeries followed. Christian is still undergoing physiotherapy to improve shoulder function and has follow-up scans every three months at Munich University Hospital. He is considered NED since his tumor removal in 11/2022.

Courtney Rodbard - Canada - 39 y/o

Diagnosed in 2021 after struggling with breathing. Fluid was initially discovered around around her heart and after draining it, doctors found a 10+ cm Synovial Sarcoma mass growing behind her heart. Courtney was originally told the tumor was in was "inoperable" by her care team. In spite of her dire prognosis, she chose to undergo 6 rounds of AIM chemotherapy under the care of Dr Margot Burnell at St. John Regional Hospital in Canada. In addition, the St. John's team recommended 25 rounds of radiation under the care of Dr. Farah Naz. During her treatment, her care team brought Courtney's case to Halifax and presented it to Dr Andrew French, a Thoracic Surgeon. Dr. French agreed to operate to remove the Synovial Sarcoma tumor in Dec 2022. After 10 days medical coma and 3 weeks in hospital, Courtney was returned home and is now NED. She undergoes CT scans every 3 months.