Stephanie’s Story

Osteosarcoma at the Fibula
Age at Diagnosis: 31
Year of Diagnosis: 1999
Location: Pennsylvania, USA
Surgeon: Dr. Richard Lackman in Philadelphia

Diagnosis: I had a pain in my left leg off and on for a while, but since I had just started running, training for a marathon for the cancer society of all things, I didn’t think much of it. It got bad in Jan of ‘99 and I ended up in an ER because I could not walk, they blew it off, would not do an x-ray because they told me it was a tissue injury and I just needed rest. Ha. I ran the marathon in June, the pain got worse in the fall. I went to see an orthopedic guy who actually said to me “if it was a tumor you would be dead by now, don’t worry” and ordered an MRI. As the MRI was being done, I saw WAY too many people in the booth. A doctor showed up and said, and I quote, “We are now going to give you a shot of dye to find out what kind of tumor this is”. Just like that. It was awful. I am a nurse and was actually working that day had the scan done on my break.

Within a week I had a PET scan, total body scan, and double port implanted. I was about to start fertility treatments, and wanted to wait and freeze some embryos but they would not let me wait, treatment was started right away. I think I was in a trance; it all did not seem real. I am a pediatric IUC nurse; I have seen this cancer and have seen kids die from it.

Treatment: I was started on 4 six week cycles of chemo, then had the tumor removed in Feb. That was hard for me, I could not understand why they would not just take it out first. I was sick a lot, lived in the hospital and had a lot of time in the ICU. Right after the surgery the doctor told me the tumor was ‘clearly dead’ and things were going well. A week later they called me with the pathology results, the first question they asked was if I was alone or not. Then they told me the tumor was less than 10% dead and all the treatment would have to be changed. I was being treated at Pennsylvania hosp in Philadelphia. We went shortly after thaqt for a second opinion at Sloan Kettering, they said the same thing as my docs here. They then changed my treatment to Ifex/Mesna, I was supposed to get 4 cycles but I got toxic from the chemo, was having hallucination and I could only complete 3. The hospital was hard. Nights were the worst, I have awful memories. I then also had to have two more surgeries to clean the boarders, because the tumor was so alive when they removed it. I spent the millenium 1999-2000 in the hosp in the ICU. At least I will always remember where I was….

Recovery: I’m doing OK. They removed the bone but left the joints, I can’t run marathons anymore but I really would never want to do that again anyway. The joints hurt when it is damp. My husband and family And friends have been amazing, all doing more than I would even imagine. Even little things like bringing my husband food at home all the times I was in the hospital, I have one friend who did that weekly, stocking up my fridge while he was there with me, he would just always have things there.

I had a lot of issues with depression and panic attacks after all the chemo was complete and I was sent home alone. I would be fine one minute then hysterical crying the next. I would love to know if anyone else has had that happen, or if I was/am just not coping well.

I haven’t had metastasis yet, but it scares me so bad. I’m almost at my 6 Year out mark of diagnosis, Oct 28th, and I keep thinking as soon as I relax it will show up on a lung Ct. I have a 2 1/2 year old little boy named Max now, and I am so afraid of it coming back and it scares me so bad.

Life Now: IT’S GOOD! For a long time I could not go back to work in the hospital, now I am back and I think better, having been on the ‘other side’. I can still run, I do a lot of biking, and the panic attacks and few and far between. A friend and I were talking about it recently, and it just does not seem real. A funny thing is before I got sick I had long, straight blond hair. Down to my waist, it was just….me. I was always trying to make it curl and it never would. NOW I have blond curly hair and I am always trying to make it straight. One more thing is I never worry about bad haircuts anymore, because I know it really will just grow back!!!

Thoughts and Hints for New Patients: Hang in there. One of the first things my amazing doctor, Dr. Staddon said to me was “You are going to have a year from hell; then you will be okay.” I didn’t believe him, but six years later I have a beautiful baby boy and am doing great. He was right!!!!