Steve’s Story

Osteosarcoma at the Proximal Femur
Age at Diagnosis: 13
Date of Diagnosis: January 1991

Diagnosis: I started having pain in my right leg in 1991. It felt like a pulled muscle, but instead of getting better, the pain finally got so bad I came home crying one day. My family was the type to not go to the doctor unless something was serious. I went to my family doctor and he recommended x-rays. He told my parents, “There’s something there, it could be an infection, but it looks like cancer. You need to go to a specialist.” He recommended Mayo Clinic in Rochester, MN, where I had an impressive amount of tests, but still no one was 100% sure. People kept trying to reassure me it could “just” be an infection. I finally was scheduled for a Biopsy. This all happened VERY quickly. I’d say within one week, maybe a little longer I was in surgery. During this time period, I was more in shock then anything. I didn’t know what to think, but I knew I wasn’t giving up. I knew there was nothing I can do but take it one day at a time.

Treatment: I started a high dose regiment of chemo very quickly. I can tell you I had Methotrexate, Ifosfamide, Adriamycin, and Cisplatin. I believe it was 3-5 days off, then Methotrxate, then 3-5 days off, then Ifos. This would repeat for a couple weeks, then I get high dose Adriamycin. Only 3 or 4 doses of Cisplantin. I had chemo for 14 months, only pausing for blood counts. It was a harsh schedule. The only time I got really down was when I had a friend in the hospital with the same cancer, passed away from a reaction to the Adriamycin. I also nearly gave up during my last dose of Adriamycin. It was my last scheduled dose of this drug and my white blood cell count when down to nothing. I got put in a clean room. That was the only time I had doubts of my survival. It didn’t rebound and I had no reaction to a blood cell booster. After about a week they tried again and I started recovering.

All the rest of the time I was cheery. The nurses were great. We used to play jokes on each other all the time. Once I came back from PT and my bed was gone with just a blanket and pillow on the ground and a note saying “budget cuts”. The doctors there were also top notch. No ONE doctor was in charge of my treatment. There was a team of oncology doctors in charge of treatment, and a team of surgical doctors headed by Dr. Franklin Sim, one of the best doctors in the world for doing what had to be done later. I really thought this was a great approach to medicine.

I should have lost my leg, but they tried using an allograft that had natural bone, re-attaching muscles and having my bone fuse with a donor bone. I don’t know all the details of this first rebuild-It didn’t last long. Massive infection started and quickly built. I had IV antibiotics. They also used a scrape and flush method on my leg. I had three surgeries in three days-exhausting. Each time they could scrape the bones and flush with anti-biotic solution, leaving the wound somehow partially open. I don’t know how they did that; I didn’t get to see it because it was wrapped up. Meanwhile during all this, there was a concrete(?) block spacer implanted in my leg laced with anti-biotic beads.

I eventually had a second version of the rebuild, more extensive, but still rarely done. It had a fundamental weakness though. The upper femur was donor bone, the mid and lower femur were my bone. There was a brace on the outside of the two bones that was strapped to them to keep them together. A metal rod when from my hip (partial hip at this point) to my mid femur. This worked well for a couple years.

In 1995 I tripped at college and the bone cracked where the metal rod terminated. It didn’t hurt, and held together long enough with the internal support brace to schedule another surgery. 10.5 hours under. I now have the same set up as before, except with much less of my original bone. The bones fused perfectly. My hip is a FULL hip replacement now. The metal rod extends from my hip ball down to my knee and is anchored there. It required “updating” in Nov. 2006 due to wear and what started to be frequent dislocations.

Life Now: Since my last surgery in 2006 I’ve had little problems. With that much metal in my leg it’s only natural that I have some discomfort once in a while, but nothing severe. I’ve been able to go sledding, biking, swimming, hiking, camping, spelunking (cave diving), boating, just about anything that doesn’t involve running. I can kind of jog with a bad limp, but I’d pay for it the next day, so that rarely happens.

The only long-term issue I have with this implant is the hip replacement. Even though it had been recently updated, it is expected to last about 20 years, at which point I will have to have another hip replacement. My outlook on this is they are making advancements in plastics and ceramics all the time. The next hip I get may last 30 years! I should also mention that I walk un-aided. If it’s sore I’ll use my cane, but I hardly need that anymore. There has been no sign of the “c” bug since 1992.

Career is normal for me now. It sucks sometimes having to use vacation days for check-ups, or because your hip bothers you at 32 years old. But that’s a very small price to pay to be alive and healthy. My family life is very good. Though I’m single and don’t really have a family of my own, I’m very close with my parents and brothers probably more so then if I didn’t have to fight for my life. I have a lot of hobbies – too many for the time I have .

I enjoy life. I also think that “we”, as survivors, see things different than others. Things are just a little bit more beautiful, just a little bit more precious. I love going boating and camping and try to stay active. Life is so normal for me in the fact that I have trouble dealing with my limitations when they do come up. I have a habit of pushing myself TOO hard at times.

Thoughts and Hints for New Patients: Stay patient. Every day through treatment is another day closer to being done with them. Keep a good attitude. Laugh loud, love much, and live strong. Do whatever it takes to keep a happy positive attitude. And remember, a lot of people have it worse then you. In some ways you are lucky. I’ve only gotten active again in the community after meeting Christine Schauf. She was the most selfless and caring person I have ever met. She was also tough as nails and never gave up in the face of incredible odds. She helped inspire me to help others, to be an inspiration for those just diagnosed and still going through treatments. I want to show people that it can be done. You CAN have a normal, long life. I’m proof of the fact that CANCER IS NOT THE END OF THE WORLD. It can be the beginning of a more self aware journey through life.

Never give up, and never loose hope. Each day through treatment is one day closer to being done with them. You have to keep laughing and keep your spirits up during treatment.

“Until there is a cure…Peace, Love, Hope” –Chris Schauf