My name is Robert. I am 35 years old. In December 2012, I went to the emergency room for a double hernia I had been living with for years that had become unbearable. Upon the visit, they noticed on a scan a mass the size of a grapefruit in my back near my spine. I had the double hernia repair in January 2013. Shortly after that, I had a biopsy. The results did not come back immediately. They were sent it off for second opinions. I was diagnosed with a rare Myxiod Chondrosarcoma (one of less than 500 known to exist worldwide at that time). I was scared, confused, crying, and didn’t know what to do. I was given my options and I started the fight. I had six weeks of radiation treatments to shrink the mass – one a day, five days a week. A month after this, the levels of radiation lowered to where they would do the removal surgery. On May 14, 2013, I went to the University of Louisville Hospital in Louisville, KY, where Sarcoma specialist Dr. Charles Scoggins performed the surgery, removing a mass in my lower back the size of a baseball (an inch away from my spine) and also removing the top of my right pelvis. There was an incision in my back, an inch away from my spine, that went from my waist about 17 inches up my back. I donated the mass to the University of Louisville oncology research laboratory for studying, hoping they can learn from a baseball-sized mass and be able to help others in the future. I saw it and named it Herbert. After physical therapy for months, I went back to work and rebuilt my strength. Not a day goes by without experiencing moderate to severe pain. I do physical work for a living (plumbing and maintenance type work) and this has made my job difficult at times. Mentally, it is very exhausting, with feelings of giving up. I have made it this far, I will not quit. I am a survivor. Early detection saved me. I am now 16+ months in remission. If you’re in doubt, get scanned. I hope at least one person can benefit from reading my story.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!