Karen’s Story

Parosteal Osteosarcoma at the Proximal Tibia
With lung mets
Age at Diagnosis: 45
Year of Diagnosis: 2004
Location: Georgia
Surgeon: Dr. David Monson in Atlanta

Diagnosis: In December of 2003, at the age of 44, I went to the doctor to have my cholesterol checked. In an attempt to get my money’s worth for the office visit, I casually mentioned to the doctor that I had a pain in my leg on and off over the prior two years. He sent me for an x-ray that afternoon and that was the beginning of my osteosarcoma adventure!

The radiologist’s report from the x-ray said “suggestive of parosteal osteosarcoma”. An MRI the next day showed a mass that was “worrisome for sarcoma”. Let the WAITING begin! That was mid-December and due to holiday vacations (the doctors’– not mine) it was over three weeks before I could get an appointment with an orthopedic oncologist. Meanwhile, I scoured the internet for anything and everything I could find on osteosarcoma. Once the ortho-onc saw my initial X-ray and MRI, he was convinced that the tumor was Parosteal Osteosarcoma. That was music to my ears. . . because by that time, (after three weeks of research) I had learned that Parosteal was a low-grade variety of osteosarcoma and was usually treated successfully with surgery alone. Even with my official cancer diagnosis, I actually left that appointment RELIEVED because I knew at that time it could have been SO MUCH WORSE.

Treatment and Recovery: Limb sparing surgery went off without a hitch in February of 2004. I had a 9 cm section of both my tibia and fibula removed. The tibia was replaced with a cadaver bone (allograft reconstruction). The missing section of fibula was not replaced but I can barely tell it’s gone. I left the hospital after 3 or 4 days without so much as a bandage on my leg. No cast, no brace, just a leg full of staples. I was on pain meds for about 10 days after surgery but really haven’t had any significant leg pain since. I was on crutches for 6 months but both the surgery and recovery were uneventful. (Thank you God! Thank you Dr. Monson!)

Metastasis: At my 6 month check-up in August of 2004 I received good news and bad news. The good news was that the leg was healing beautifully and I could finally get rid of my crutches and cane. Back on two feet!! Yea!!! The bad news was that there were two suspicious spots showing up on my lung CT scan. In hindsight, the spots were also there on my CT scan from 3 months earlier. The next scan in November of 2004 showed the spots appeared to be growing so I went to see a lung surgeon and had a couple consultations with a medical oncologist. After much research, deliberation, and discussion with all of my doctors, everyone agreed that chemotherapy was not the best option at that point, but lung surgery was the treatment of choice.

Lung surgery was performed in February of 2005, exactly 364 days after my original limb sparing surgery. Because the nodules were in BOTH lungs they used a procedure called a median sternotomy where they entered my chest by sawing through the breast bone. Believe it or not, it wasn’t all that painful! They ended up removing 4 small nodules– all grade 2 metastatic osteosarcoma. At my 3 month follow-up appointment in May of 2005, a few more tiny spots showed up on my lung CT scan. We continued to keep a close eye on those slow growing nodules for almost two years (with CT scans every 3 months) until they reached about 1cm which is the ideal size for resection. I had thoracotomies in January and May of 2007 to remove three more nodules—all grade 2 osteosarcoma.

Life Now: I continue to have checkups and CT scans every three months and I’m excited to report that at the present time I have NO EVIDENCE OF DISEASE. I realize that my cancer could come back at any time, but I refuse to ruin an otherwise good day with worries about what may or may not be in my future. I’m doing my best to live life to the fullest! I know that I am extremely fortunate to survive osteosarcoma and to be virtually pain free and without physical limitations. I don’t take this blessing for granted.

Thoughts and Hints for New Patients: In my case, the WAITING for a diagnosis and treatment plan was the hardest part of my whole sarcoma experience (so far). The “unknown” is much more difficult for me to handle than the reality of my disease and surgeries to date. Educate yourself about your disease and it’s treatment; ask a million questions; and take full advantage of all of the support, knowledge and experience that you’ll find in this group of ABC Survivors. If you participate in the forum and weekly chats, you’ll soon realize you’re not alone in your battle. We’re all here for you and we want to help you through this.