TELL YOUR STORY
We invite you to tell us your
sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Type of Sarcoma: Spindle Cell Sarcoma
My name is Peter Brown and I live in the West Texas city of Abilene. In October of 2016 I noticed a lump on my upper left thigh. I thought it was a work related injury but after no improvement for two months I sought medical help. After referral from my GP, I was under the care of an experienced surgeon who misdiagnosed me for two months, giving me the wrong treatment completely.
In desperation and feeling hopeless in April 2017 I drove myself to the ER. I was in great pain but somehow I seemed to have much difficulty in getting medical personnel to understand something was really wrong with me. Finally, after some proper scanning was done I received the crushing news from an oncologist that there was in fact a large tumor in my thigh. I was provided a very short list of doctors – just three - that could help me in my state of Texas. I chose Dr. Casas and was transported to Dallas.
Within days Dr. Jorge Casas-Ganem, a brilliant orthopaedic surgeon at Dallas Sarcoma Associates, removed a large, cantaloupe sized tumor. Later I was informed it was a spindle cell sarcoma tumor. The surgery left a major wound and void in my leg. I had a tube sewn in my leg to drain the fluid. The amount of fluid draining was very great but slowly decreased over several weeks. I did have two drains surgically but these devices tend to clog up with blood clots causing your leg to swell.
After being sent home with a drain in my leg it clogged up and my leg swelled to the point of near bursting at the incision. Being under home health care nursing, a wonderful nurse probably saved me by making a hole to drain liters of fluid out of my leg until I could get back to Dallas and get another drain installed. These drains are temporary devices and tend to malfunction, which is scary when your doctor is 300 miles away. In this ordeal, scary days included the day the drain tube was pulled out - would my leg blow up – no, it did not. Going back for follow ups after an MRI - would this growth return? No, it has not as of July 2019!
Radiation treatment made me pray dearly as it hurt in areas no one should hurt. It was 30 treatments of radiation. I prayed the whole way to the clinic every time. During this whole ordeal I did have to battle anger toward medical personnel for the mistakes they made, which were big. Or, I could choose forgiveness and thankfulness to God that I kept my leg and could walk. I choose to be thankful, love God, and have more compassion for others who are ill.
I previously had almost never been sick in my whole life - now I understand illness. I cannot do all the things I previously could and my leg is always in some state of swollen. I wear compression gear on my leg when I need it. I work full time and am so grateful I can work. One frustrating thing to me - I think through a miracle I lived, but others don't realize really the miracle of it all to be alive because they have not experienced it. Advice to others, if you have a lump anywhere that appears for no good reason insist on proper scans such as MRI or CT at the least, anything less is not adequate.