Type of Sarcoma: Epitheliod Sarcoma
Date of Diagnosis: 1995
Location: hand
I was diagnosed with a sarcoma cancer called Epitheliod Sarcoma in September 1995. It all started when I developed a lump on my right hand in 1987. I went to a physician who thought it was a ganglion cyst. He took a syringe and tried to remove the fluid – nothing came out. It was determined to be a solid tumor. The first surgery I had was yet that year. It kept re-occurring, and I had it removed three more times over the next eight years. Each time I was told it was benign. In 1995, I again had the lump removed.
I was on summer break between my first and second year of nursing school. It was supposed to be no big deal – the routine was to have the surgery, then be in a cast for about two weeks. At my post operation visit with the physician, this is what I hear, “We sent the tissue to pathology. The pathologist called to say they are concerned about the tissue sample. They think you need to see a specialist.” I heard nothing after that – I left and went home in a fog. Apparently an appointment was made for me to see an oncologist.
I was referred to an oncologist at Mayo Clinic, but for some reason my insurance would not pay for this. Even though they would not pay for a Mayo visit, they could not find me an oncologist that was familiar with this type of cancer. It had now been over two weeks since I had this devastating news and I still did not have an appointment with a physician.
My sisters, Mary Jo and Nancy, started to call all the oncologists in the state. And this is how I came to meet Dr. Cheng at the University of Minnesota Masonic Cancer Center. Up until this point, everything was hurry up and then wait. My family and I met with “The Team” as I called them. They had a plan and discussed everything with me and my family. They wanted to start immediately. I remember thinking they all looked so grim. So, for the next year I kept myself busy by having radiation treatments, surgery, more radiation treatments, and physical therapy. I had chest scans every three months, then six months, then yearly until I was out 10 years.
After so many years, I consider myself a survivor. I went on to finish my nursing degree. I started to receive letters from my physicians about Rein in Sarcoma. This is how I came to meet Karen’s parents Pete and Sue Wyckoff and all the wonderful Rein in Sarcoma volunteers.
I hope telling my story and working with RIS will help others find the best care available to them.
