Today we hear from James, a man who recently wrote us to tell us his story of sarcoma. Like so many others, he was initially misdiagnosed. Here is James’ story.
James tells us “In 1990 I had a testicle removed and diagnosed with seminoma. Had radiation therapy as preventative.”
Fast-forward to November 2002 and James had a mass in the retroperiniam (the space between the peritoneum and the posterior abdominal wall that contains especially the kidneys and associated structures, the pancreas, and part of the aorta and inferior vena cav, according to Merriam Webster). This was diagnosed as recurrent seminoma and chemo started, but was stopped, as it was not working.
James could not find the right treatment in Roanoke so he researched a bit and found Dr. Foster at Indiana University Medical Center. James says “We went there with the slides from the diagnosis of Seminoma. Their pathologist almost immediately upon looking at the slides told us it was not seminoma but sarcoma. Subsequently we learned it was most likely a radiation-induced sarcoma, twelve years after the initial radiation in 1990.”
James traveled back to Roanoke and had surgery to remove the sarcoma in February of 2004. He had recurrences later in 2004 and then in 2007. In 2008 a spot was detected on PET scan and that was removed in Indiana by the surgeon. The pathology was sarcoma.
In June 2013 a 4-5 cm mass was discovered in the mesentery area. They went back to Indiana University Hospital because no one in Roanoke thought it was operable. The surgeon at IU said he could operate and James was scheduled for surgery July 29, 2013 at Indiana University Hospital.
James, we pray your surgery was a successful one and wish you a speedy recovery. We hope this is your last encounter with sarcoma and we appreciate you sharing your story.
If you or someone you know would like to share your story of sarcoma or rare cancer with EDDF, please click this link.