Periosteal osteosarcoma at the proximal femur with recurrence and lung mets
Date of Diagnosis: February 2004
Age at Diagnosis: 24
Diagnosis: I began having shooting pains in the fall of 2002 in my right femur while I was attending college full-time at the University of Kansas. I was an active 22 year old at the time and had no reason to suspect that there was anything wrong. I loved to run, was always pretty active and never felt any physical limitations growing up as a kid.
After steady pain, I decided to make a visit to my general physician and see if he could provide any insight into the pain. He said he thought that I might have a “baker’s cist” behind the knee and an MRI would tell us if that was the case.
The MRI came back negative and showed no signs of anything abnormal. Following those results he decided to send me to an orthopedic doctor in hopes we could find more answers. The doctor had some ideas of what he thought might be wrong and proceeded to send me through two MRI’s (one of my back, one of my lower leg) and one CT scan of my pelvis area. The MRI’s came back negative and the CT scan showed some enlargement of the veins in my pelvis.
The doctor told me that there wasn’t anything conclusive that there indeed was anything wrong. He said I would need to “wait until whatever it was got worse” so they could diagnosis it. Discouraged, I left the doctors and dealt with the pain for the following year.
It was not until I graduated college and moved to Chicago that I decided to once again follow-up on the pain I was having. With new insurance from a new job I went to a new general physician and explained my story. She began to examine the area where I said I was having really bad pain (mid-femur area) and she made an appointment for me to have an MRI of the area the next day.
I was at work on a Friday in February 2004 when the doctor called and told me to sit down. She said that there was a grapefruit sized tumor on my right femur and in her opinion amputation might be the best option. I had no family in town as I had just moved, so I did a lot of phone calling and spending time with friends to soften the blow.
My doctor called me the following couple of days and let me know that there was an orthopedic oncologist who was trained in bone salvaging…the concept of doing all that can be done to keep one’s limb from amputation. A few weeks later I met with Dr. Walter Virkus of Rush University Medical Center here in Chicago. He was great and said he’d do all he could to save my leg. We did a biopsy and found out the tumor was indeed periosteal osteosarcoma. Next steps…surgery.
Treatment: I had my first surgery April 8, 2004 to remove the orange-sized tumor I had on my right femur caused by periosteal osteosarcoma. The surgery was 7+ hours and Dr. Virkus and his team of specialists removed 9 inches of my femur bone, replaced it was a cadaver bone from a donor and inserted some metal rods to help support the femur (see MRI scan photo). I stayed in the hospital for around a week with a 17 inch scar running from my knee to my hip. I was released from the hospital and taken home where I was on crutches for 3 months and not allowed to walk with my full body weight. I had home health nurses, family flew in to stay with me and I began home and outpatient physical therapy.
I went through 3+ months of physical therapy to learn to walk again and get mobility. It was one of the most painful experiences of my life but at the same time, a great lesson for me to realize my internal strength.
I began to walk again with no limitations in July 2004. I had worked so hard that I could now walk without anyone even noticing that I had cancer – which was always important for me. I began to work out 3-4 days a week and things remained well until April 2005.
Recurrence and Metastasis: In April 2005, I went in for my one-year check-up and doctor told me that there was another small growth in my right leg and we would have to remove it. On May 5, 2005 I had a small follow-up surgery and the growth was removed and I was on crutches for 2 weeks and back to normal within the month.
Things remained well until June 2006 when my scans once again showed that a tumor had returned in my femur area, as well as a small spot on my pelvis. Since this was my second recurrence, I met with an outstanding oncologist (Dr. Paul Kent) at Rush University Medical Center here in Chicago. I underwent 12 weeks of in-patient chemo in hopes of shrinking the growths in my leg and pelvis. Once I completed chemo, we moved into surgery and I had the growth removed, as well as a bypass surgery on the veins and arteries in hopes of preventing any further recurrences.
After the surgery, pathology results showed there was no significant decrease in my tumors due to the chemotherapy I had just completed. It was discouraging; however you move on and do what you can. It was recommended post-surgery that I undergo radiation therapy. I underwent 5 weeks of radiation treatment and recovered fully in January 2007.
Things seemed great for a few months until April 2007 when I had my third recurrence. This time I had a spot in the soft tissue of my femur and two nodules on my lungs. I had VATS lung surgery on April 20, 2007 by Dr. Michael Liptay of Rush University Medical Canter here in Chicago. He was amazing and we were able to remove the two nodules without major complication. I healed up from the lung surgery and we decided to move forward with more chemo, this time more aggressive doses. We decided to leave the tumor in my leg as a marker so we could determine the effectiveness of the treatment. Mind you, I had 3 previous surgeries on the leg, so going in to remove it would be risky and proved to not be successful in the past.
I’ve undergone 6 months of the more aggressive chemo (outpatient, 5 days a week, 8 hours a day) and we had some successes (one tumor disappeared completely) and some loses (two more showed up). The results were mixed and I decided to stop the chemo treatments in October 2007. I began to recover for the next few months, building my system back up.
In February 2008, I went back in for another scan/check-up and we discovered I had a new lung nodule – my fourth recurrence and second in the lungs. The nodule was small and we monitored it closely and in April 2008 it had doubled in size; however still small about 1.5 cm. We also found a second nodule that was 4mm in size. Currently, I’m still monitoring the growth rate and making a determination when/if I want to take these out with another surgery.
Life now: My life is actually great. I still work full-time in a marketing division and enjoy everyday. I hang out with my friends, talk to my family daily and look forward to what the future can bring. The weather is great in Chicago and I can’t wait to enjoy the summer!
Thoughts and hints for new patients: One of my favorite quotes is “You have to accept whatever comes and the only important thing is that you meet it with the best you have to give at the time!”