Patient Stories

Alexandria, KY – 37 y/o

Primary Tumor Location: Skull (Base)

Reoccurrence(s): None

Treatment: Surgery (Tumor Resection), Radiation Therapy

Treatment Center: UC Health

Status: NED (No Evidence of Disease)

Diagnosed in November 2021 at age 36 after experiencing severe neck pain and noticing a palpable lump. A 5 cm synovial sarcoma tumor was found at the base of his skull. Dr. Yash Patil with UC Health successfully removed the tumor, along with some of the skull and surrounding musculature. After clear margins were achieved, he underwent seven weeks of radiation. Andrew is currently NED and continues to be closely monitored by his team at UC Health.

Abilene, TX – 8 y/o

Primary Tumor Location: Knee (Left)

Reoccurrence(s): None

Treatment: Surgery (Limb-Salvage), Donor Allograft Reconstruction

Treatment Center: Dr. Chappie Conrad III

Status: NED (No Evidence of Disease)

Diagnosed with synovial sarcoma in the left knee in August 2018 at the age of 8. She was misdiagnosed by multiple physicians for two years. A local surgeon agreed to remove the 3 cm tumor, and a biopsy revealed synovial sarcoma with positive surgical margins. The tumor was superficially located directly on top of her patella tendon, but the positive margins extended into the proximal tibia and patella tendon. After consulting multiple hospitals across the U.S., Dr. Chappie Conrad III offered a solution to avoid amputation. On October 16, 2018, Ciara underwent a radical limb-salvage operation, including surgically closing one of her growth plates, patellar tendon resection with donor allograft reconstruction, and a proximal tibia allograft. She has been NED since that date.

Philadelphia, PA – 12 y/o

Primary Tumor Location: Cheek (Left)

Reoccurrence(s): None

Treatment: Surgery (Tumor Resection), Chemotherapy, Proton Radiation

Treatment Center: Children's Hospital of Philadelphia (CHOP)

Status: NED (No Evidence of Disease)

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. Midway through her treatment, she underwent six weeks of proton radiation led by Dr. Kristine Hill-Kayser. Katie has been NED since February 2022.

Haddonfield, NJ – 36 y/o

Primary Tumor Location: Knee (Left, Behind)

Reoccurrence(s): None

Treatment: Surgery (Limb-Sparing, Nerve/Vein Grafts), AIM Chemotherapy, Radiation

Treatment Center: Thomas Jefferson University Hospital, Rothman Orthopedics

Status: NED (No Evidence of Disease)

Diagnosed in July 2021 after discovering a cyst-like bump behind her left knee, initially assumed to be a sports-related injury. After a month of testing, scans, and a biopsy, a 7 cm synovial sarcoma was confirmed. It was localized and had not spread. Jena chose treatment at Thomas Jefferson University Hospital in Philadelphia with Dr. Basu Mallick, which included six rounds of AIM chemotherapy, 25 rounds of radiation, followed by successful 'R0' limb-sparing surgery with nerve and vein grafts performed by Dr. John Abraham at Rothman Orthopedics. Jena has been NED since March 2022.

Cressey, CA – 37 y/o

Primary Tumor Location: Arm (Right)

Reoccurrence(s): None

Treatment: Surgery (Tumor Resection, Nerve Graft), AIM Chemotherapy, Ifosfamide, Radiation (IORT), Mesna

Treatment Center: MD Anderson, UCSF

Status: NED (No Evidence of Disease)

Diagnosed with synovial sarcoma in the right arm growing into his median nerve in November 2002 at age 37. A 5 cm tumor was removed at a local hospital after being assured it was a 'fluid-filled benign cyst.' Pathology determined it was synovial sarcoma. Steven sought treatment at MD Anderson and received care locally at Memorial Hospital, including six rounds of AIM chemotherapy, followed by eight weeks of radiation therapy. In 2006, he had a recurrence in the same location. He was treated at UCSF by thoracic oncologist Dr. Thierry Jahan and orthopedic oncologist Dr. Richard O’Donnell, who performed an 8-hour surgery to remove the tumor and the affected section of the median nerve. UCSF neurosurgeon Dr. Nicholas Barbaro performed a nerve graft to repair the median nerve. Treatment of the recurrence consisted of IORT and four cycles of ifosfamide and mesna inpatient at Memorial Hospital. He continues to see Dr. O’Donnell at UCSF yearly and has been NED since 2007.

Bay Area, CA – 49 y/o

Primary Tumor Location: Lung (Lower Middle Left Lobe)

Reoccurrence(s): None

Treatment: Surgery (Lobectomy), AIM Chemotherapy

Treatment Center: Northern Kaiser California, Stanford, Sylvester Cancer Centre Miami

Status: NED (No Evidence of Disease)

Diagnosed with synovial sarcoma of the lower middle left lung lobe (4.8 cm) in April 2020. She had zero symptoms, and the tumor was found by accident. The lower left lobe was removed through Northern Kaiser California by thoracic surgeon Dr. Jeffrey Velotta (not a sarcoma specialist, as she didn’t know it was synovial sarcoma at that time) in May 2020. She chose not to have the biopsy before surgery and had the tumor removed directly, only later finding out it was synovial sarcoma. Lisa had two more opinions through Dr. Kristen Ganjoo at Stanford and Dr. Gina D’Amato at Sylvester Cancer Centre Miami, with whom she follows up after each four-month scan. Surgery was considered R0 with clear margins and no sign of metastatic spread. While a 4 mm nodule is visible in the upper left lobe, it remains stable. Lisa completed only two rounds of adjuvant AIM chemotherapy, as her body did not cope well. Considered NED since May 2020.

Colorado Springs, CO – 39 y/o

Primary Tumor Location: Thigh (Left)

Reoccurrence(s): Lung, Adrenal Gland, Kidney

Treatment: Surgery (Limb-Sparing, Allograft, Lobectomy, Adrenalectomy, Kidney Removal), AIM Chemotherapy, Ifosfamide, Radiation (IMRT), Methotrexate, Cisplatin

Treatment Center: MD Anderson

Status: NED (No Evidence of Disease)

Originally misdiagnosed as having small cell osteosarcoma, a 5+ cm high-grade tumor was found in her left thigh invading the femur. She completed four rounds of high-dose doxorubicin (outpatient) and four doses of intra-arterial cisplatin (inpatient). Limb-sparing surgery with allograft tumor removal was performed in June 2009 with clear margins but not enough necrosis to the tumor. Post-surgery, she completed nine rounds of both high-dose methotrexate (outpatient) and high-dose ifosfamide (inpatient), finishing treatment in May 2010. She was NED until 2013 when a tumor was found in her right lung, leading to a right lung lobectomy with clear margins. NED until 2015 when a tumor appeared in her left lung, resulting in a segmentectomy with clear margins. In 2016, a tumor on the right adrenal gland led to an adrenalectomy without clear margins, followed by five rounds of IMRT radiation. NED until 2018 when a tumor was found in her right kidney; surgery removed the tumor but not with clear margins. In 2020, her right kidney was removed with clear margins. She has been NED since December 2020 and is now 54 years old as of September 2023.

Europe

Primary Tumor Location: Shoulder (Left)

Reoccurrence(s): None

Treatment: Surgery (Tumor Resection), AIM Chemotherapy, Radiation, Reconstruction Surgeries

Treatment Center: Munich University Hospital

Status: NED (No Evidence of Disease)

Diagnosed in January 2022 at the age of 32 after almost three years of intermittent 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 6 cm tumor was diagnosed at a sarcoma center. The tumor, located between the shoulder joint and collarbone, was removed after neoadjuvant AIM chemotherapy and radiation therapy, which had shrunk it down to 3.5 cm. 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 November 2022.

Canada – 39 y/o

Primary Tumor Location: Chest (Behind Heart)

Reoccurrence(s): None

Treatment: Surgery (Tumor Resection), AIM Chemotherapy, Radiation

Treatment Center: St. John Regional Hospital, Halifax

Status: NED (No Evidence of Disease)

Diagnosed in 2021 after struggling with breathing. Fluid was initially discovered 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 "inoperable" by her care team. Despite her dire prognosis, she chose to undergo six 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 December 2022. After a 10-day medical coma and three weeks in the hospital, Courtney returned home and is now NED. She undergoes CT scans every three months.