My Sarcoma Story – Charles
His wife Stacey tells the story: My husband was misdiagnosed for almost two years. By the time he was finally diagnosed with undifferentiated pleomorphic sarcoma of the shoulder, he was hospitalized and totally bedridden. After his entire course of radiation (wheeled to it in a hospital bed), doctors in Baton Rouge and New Orleans said they could do no more for him. They said he needed his arm amputated, but that they were unable to do it. We started scrambling to get him to MD Anderson and got him there in the bed of a motorhome in May of 2017. (He had been hospitalized since February.) The amazing team of surgeons assigned to him at MDA were able to save his arm but removed his shoulder and the basketball size (diameter) tumor with clear margins. His sarcoma specialist recommended chemo to reduce the chance of recurrence, so he did that. He has had no evidence of sarcoma since his surgery and lives life to the fullest every single day. Since surgery he has had many adventures including zip lining in the rain forest of Costa Rico, riding his bike twenty miles round trip in one day recently, hiking in National Parks, and many more. While those adventures are awesome, we are both grateful for every single day and wish that all could have great results.
The most important thing we learned from our experience is to be seen at a high-volume sarcoma center as soon as possible. It’s also important to take things one day at a time and be your own advocate. Don’t be afraid to ask questions and speak up if something doesn’t seem right.