Type of Sarcoma: Spindle Cell Synovial Sarcoma
Date of Diagnosis: 2013
Location: leg, lung
My story began in Spring 2013 after completing 20+ years of income tax seasonal work for Mayo Clinic’s Office of Staff Services in Rochester, Minnesota. My right hip began to ache and the pain became concerning enough to visit my primary care provider at Mayo in late May. X-rays were taken and pain medication was prescribed. The pain continued to increase and various pain meds were tried to no avail. An MRI was ordered in June which showed a mass at the top of my right femur. After a flurry of tests and CT scans Dr. Okuno explained a diagnosis of Stage IV High Grade Spindle Cell Synovial Sarcoma. The tumor wrapped around my femur was about the size of a deck of cards and my left lower lung contained a walnut sized metastatic tumor.
Things were looking very bleak with the following note written in my history file in July by a consulting surgeon at Mayo: “Limb salvage surgery would be difficult at the present time because of the extent of her disease. However, amputation does not seem like a good option in view of the fact that she already has a metastasis. I think chemotherapy is her best option at present.”
My faith in God really kicked in and helped me to keep a positive attitude. My husband, son, and daughter-in-law were at my side and along with many friends were incredibly supportive. Prayers were said by so many on my behalf.
After getting my affairs in order I entered Methodist Hospital in Rochester July, 2013 for intensive chemotherapy hoping to get relief from my debilitating pain. On the fifth day of hospitalization my femur fractured requiring immediate surgery. Thankfully on that Friday afternoon Dr. Frank Sim, who had not been on the initial consulting team, was available for emergency surgery. He and his team removed the ball from my hip joint plus 7 inches of my femur along with the attached tumor and margins. The endoprosthesis was then cemented in place into my remaining femur.
August brought another week of inpatient chemotherapy along with lots and lots of physical therapy. September was time for removal of the tumor in my lung. Dr. Nichols did a fantastic job at St. Marys Hospital. October and November each brought a week of inpatient chemotherapy. Daily radiation treatments began in late December and continued until February, 2014.
I am so fortunate that my sarcoma was diagnosed promptly and correctly. Living in Rochester and being familiar with Mayo made everything so much easier. The team approach that Mayo employs worked so efficiently for me. It is nothing short of miraculous that now I only need a cane for mobility with no evidence of recurrence! I continue to volunteer at St. Marys Hospital and am so much more empathetic toward patients and families that I encounter there each week.
Information about sarcoma was difficult to come by until I discovered Rein In Sarcoma. The rarity of sarcoma can make you feel isolated so being able to connect with other survivors is very important. I am grateful for Rein In Sarcoma and all the support it has given me and others. Awareness of sarcoma among physicians is so crucial and played a huge part in my outcome. My hope is our named fund will increase education and help save lives in the future.
