by Darby Wicks
I found out I was the youngest girl or youngest person in Oklahoma to have giant cell tumor at fifteen years old. It was the end of my freshman year in 2010. School had just gotten out and I was happy it was summer which meant I was about to attend church camp and I was excited to reunite with all of my friends.
After church camp in late July, I was starting to have knee pains. It would come and go for the first three months. By October I was having a lot more pain. My mom took me to the doctor, they did an x-ray and it was normal, my doctor said it was just growing pains. Over the next few weeks, the pain continued to get worse and so my doctor sent me to a bone and joint specialist.
He thought, at this point, it was just my muscles and put me on something to help with that. By this time you could feel the knot starting to grow in my knee. Finaly the doctor did a MRI. It was on a Monday. By Tuesday, my dad had gotten a call from an orthopedic oncologist saying they saw a huge mass the size of a tennis ball on and in my tibia.
So Wednesday, after school, me, my dad step, step- mom and mom had to drive three hours to the new doctor. By Thursday morning she had explained the situation to us–and I was scheduled for surgery the next morning, Friday. She had thought it was cancer, but it wasn’t. During the surgery they found out it was a giant cell tumor.
Giant cell tumor of bone (GCT) is a rare, aggressive non-cancerous (benign) tumor. It generally occurs in adults between the ages of 20 and 40 years. Giant cell tumor of bone is very rarely seen in children or in adults older than 65 years of age.
They took four inches of my tibia out and replaced it with a plate and cement. From 2010-2011 I had three knee surgeries.
Two years after my first knee surgery, I found out the tumors moved to my lungs. I did a round of Xgeva for fifteen months. It shrunk them. After six months of being off it, they all grew back. About five months later I started a new treatment called Interferon. It made me sick. I got weekly shots. I had lost about 30lbs from not eating because I was sick so bad for three months. I had lost a lot of my hair. They did a CT scan to check the treatment and found out my tumors had doubled in size. I had moved up to northen Minnesota and found new doctors and they wanted to do the surgery on my lungs before the tumors got too big too operate. So in December of 2015, I had 7 tumors removed from both lungs.
It has been five years since my last knee surgery. I haven’t been able to have a job, I had to drop out of college twice all because my knee is in worse shape then it has been in 5 years. I hardly walk and when I do my toes on my right foot go numb and I can’t feel them or they get a tingly feeling. My foot stays freezing cold. It turns pink or purple a lot of the time. My knee is swollen. You can’t tell that I have a knee sometimes. I limp and can’t bend my knee at all.
This is going to sound bad but I’ve prayed that the doctors would just cut my leg off already because I’m in pain 24/7! If I had to give someone advice about life with Giant Cell Tumors. I would tell them if you’re having a problem– express to your doctor whats going on as quickly as possible. I wish I would have expressed just how bad my pain was so we could have done something sooner.
Also do not be afraid of asking questions or saying you don’t feel comfortable with something. But my favorite advice would be have faith. Be strong. This is only a moment in your life and you will overcome it. Don’t be afraid to show off your scars. You had to fight hard for them an you won so let everyone know your srong and you’re a fighter.