Marcy’s Story

Parosteal osteosarcoma at the distal femur
Age at Diagnosis: 37
Date of Diagnosis: August 2006
Location: Nebraska
Surgeon: Sean McGarry at UNMC

Diagnosis: I first saw my family physician in August feeling soreness around my right knee. He determined I had most likely torn a muscle running and said to take some Advil for a couple of weeks. I was never in a lot of pain, but my knee began to swell and I thought I had better take it seriously. I asked my Dr. to send me off for an MRI. Within a few days I was told they believed I had low grade osteosarcoma. I had never heard of bone cancer before. I have been extremely active and fit my whole life and could not believe it was possible for this to be happening to me. I had to put on a brave face and prepare for what was ahead: many tests. I was off to meet an orthopedic oncologist and had blood work done, x-rays, a chest scan, and a bone scan of my whole body. I was told we would need to proceed with a biopsy in about a week, then plan the surgery from there. No chemo was planned, we caught it early enough. It was a difficult and confusing time. Hard to find answers to all the questions I had running through my head.

Treatment: The biopsy came back as expected- with the tumor being malignant. My surgery was discussed in detail and scheduled for October. I was in surgery for 10 hours, the tumor had wrapped itself around my knee and my femoral vein, and my surgeon spent hours trying to save the vein, but had to eventually “clip it”. I had 8 inches of my femur removed and a full knee replacement. My surgeon used a 3 piece metal prosthetic with a hinged knee. It runs from my upper thigh to my mid calf. Waking up after surgery was horrible. The reality of it all was overwhelming. I was in the hospital for 5 days. I had a family member in my room at all times. The nurses were not attentive and not very sympathetic to the miserable state that I was in. The pain was awful, and I rarely slept. I believe the Dr’s made an effort to try to keep me comfortable.

Recovery: Once I got home things just got worse. I was told I would be on crutches for 3 months, but I was only able to use a walker. My leg felt like it was not part of my body. If I got up to stand, it would “pop” over to one side. If I was lying down it would “jump” up from the couch or bed. My foot was always numb and felt like an ice block. Depression set in as the holidays came around and I was barely able to move about my own home. I was constantly calling my surgeon or being taking to the hospital. There were days at a time when I could not even get out of bed because I had excruciating stabbing pain in my upper thigh (unexplainable really). Sometimes it would take a dozen attempts at sitting until the pain let up enough that I could sit. If I didn’t, I just had to stand up with my walker. Once down, I stayed that way for days until it let up. No one could tell me what was happening. Finally at the 9 month mark, my surgeon did another bone scan and was able to tell me that he believed the metal rod that was inserted into my remaining thigh bone was moving. It was too small. He had hoped I would have had more bone growth around it, but it didn’t happen. I needed to have the upper rod replaced with a larger one. I had this done in August of 2007. In addition to replacing the rod my surgeon cleaned up some scar tissue around my knee. I was in the hospital for 3 days, and this time my experience with the nursing staff was much better. The surgery was also successful.

Life now: I had in-home, out-patient and aquatic therapy during my recovery. I am still actually in recovery. I exercise daily now on my own, but nothing near what I used too. Mainly just lots of stretching, some treadmill, and finally back on my recumbent bike. I went off all my meds a couple of months ago because I wasn’t getting any relief from them for my knee pain. My surgeon gave me a steroid shot a couple days ago and we will see if I can get some relief for a while. There are many things I can’t do with my new leg, but I am still pushing myself everyday to see what new things I can do. My bend will never be more than 90 (feels like 80 to me), stairs are a big challenge, I have a slight limp, and my calf swells from lack of blood flow from the loss of my femoral vein, but I try to keep a positive outlook and see something good in each day.

Thoughts and Hints for Patients: This website has been wonderful. Many others were very scary and had way too much information. Talk to your Dr. and ask questions and press for answers. Know you are not alone.

Update in February 2009: In May of 2008 after months of continued pain and decreasing movement of my knee, my Omaha surgeon recommended arthroscopic surgery to “take a peek” at my knee cap, remove any scar tissue they could get to, and then go from there. I proceeded with that surgery in May of 2008. It was a relatively simple procedure; I was in the hospital for a few days and had a pain block in place. I returned home and for the next two months used an in home CPM unit. It wasn’t long before I realized that surgery was not the answer. The pain eventually worked its way back even more aggressively and I suffered each and every day. It was difficult to walk and the pain consumed my days and affected everyday living. The only way I know to describe what was happening, is to say that when I bent my knee, there was a visible shifting (of my kneecap?) and a “pop” that occurred as something seemed to settle back in place (you could feel it happening if you put your hand on the front of my knee as I extended it). It often felt as if something was wedged there or that possibly my knee cap was not tracking properly. Nothing relieved the pain. I was not taking any prescription pain medications. Advil, Tylenol, ice, heat, little activity, vigorous activity, regardless of what I did, nothing eased the pain.

As I neared the two year mark from my diagnosis I was feeling depleted. My surgeon in Omaha had no answers. I made copies of my films and medical notes, included a letter asking for help, and mailed it to the Mayo Clinic in Rochester, MN. And I waited, four months in all, before I received paperwork saying they would see me. That was in October 2008. Meeting Dr. Franklin Sim and having him look at my films, explain things like no one ever had, and telling me he could help me, made me see the light once again! I scheduled surgery for December of 2008. The plan was to go in to the knee, and resurface the kneecap and put in place a plastic cap device that would make my kneecap glide over my metal knee. I couldn’t wait. I would have done it that day if they would have taken me!

On December 3rd, 2008 I had my 4th surgery. It did not go quite as planned, however, much better than planned! While in surgery, Dr. Sim determined that I needed a smaller knee prosthesis as well as the kneecap resurface/plastic cap device, and he was prepared with the parts necessary. So, the surgical team basically reopened the entire incision (oh, it’s a real pretty scar now!) and took apart the prosthesis and replaced the knee, and one of the rods, and repaired my kneecap. Within a day I knew it was totally different. Painful, yes- but I could kick my knee out, and bend it with no pain what so ever. My bend is now comfortably at a 90 degree, I walk much smoother, and there is no popping or clicking of any sort. I was on crutches for about a month, but now I am driving, walking, shopping, and doing as much as my leg will allow in a day. I only hope it continues to get better with each day.