Barbara’s Story

Osteosarcoma at the Distal Femur
Age at Diagnosis: 19
Year of Diagnosis: 1974
Location: Nova Scotia, Canada

Diagnosis: I remember a pain in my right knee that woke me up from a deep sleep in the middle of the night. It was an intense piercing pain. During the day I had some stiffness walking and I couldn’t run. Being 19 I thought nothing of it. My boyfriend made me go to the doctor…he ultimately saved my life! The x-ray showed two large lesions just above my right knee. They booked surgery to “fill” the cavities with bone grafts from my back. Further investigation revealed a very slow growing but aggressive sarcoma in one of the areas. I went home for the weekend to be with friends and family and after the weekend they amputated. I was up walking on crutches a day later and started chemo in another hospital 3 days after that.

Treatment: In 1974 oncologists were still learning quite a bit about chemotherapies, I had high dose methotrexate and adriamycin. I lost my hair and was devastated! It was worse than losing my leg! The adriamycin had a high impact on me. I had fevers of 105, my throat was raw, my weight dropped to 85. I nearly died, more than once. They reduced the amount of adriamycin injected but extended the length of time I was to have it. I lost my hair twice as a result. I was fortunate to be in a cancer ward of a children’s hospital. It was a wonderful place with extremely supportive nurses and a positive atmosphere.

I had a rough summer that year (amputation was in October of 1974)…I had 6 more mini amputations for osteomyolitis in the residual limb. It was tough. My friends and family were around however, and they got me through the worst days.

Recovery: I took “baby steps” to begin with. Drove a car one month after surgery. This gave me a little independence when needed. A trip to Mexico with friends between methotrexate treatments boosted my confidence tremendously. I went SCUBA diving, swimming, snorkellling and simply had fun. My parents back home never stopped worrying…but they told me much later it was important for me to go. I realize now as a parent this was probably the most difficult thing they ever did, but I came back happy, stronger and ready for more chemo!

During treatments I decided I wanted to go to university on the east coast, to study marine sciences. In the Fall of 1976 my boyfriend and I left for Nova Scotia…we have never left. I now have 3 degrees. My strategy for surviving and thriving was not a conscious decision, I realized only much later that I set goals for myself and worked towards those goals during every step of my cancer experience. This allowed me to direct my energy in a positive direction and provided impetus when times were tough.

More Cancer: Thirty years went by quickly. Cancer was not in the forefront until my father died in 1999. We recovered from that and continued to thrive, until last year when I found a lump in my right breast. At the end of March doctors removed a 3cm invasive ductal carcinoma and 15 axillary lymph nodes…8 of which were positive. They were concerned as well about a large thyroid adenoma, which had been previously (years before) diagnosed benign and considered harmless. One month after breast cancer surgery I had thyroid surgery and they diagnosed papillary carcinoma. Just previous to that surgery doctors identified a problem with my heart function. My left ventricle ejection fraction was drastically reduced. Current research indicates that this could have been related to adriamycin 30 years before. I started chemo (CMF) in June of 2004 and finished in December. Radiation treatment of the breast was sandwiched in between chemo sessions in September. The protocol was virtually painless…so very different from 30 years before. The focus of treatment is now on the well being of the patient not the amount of chemo needing to be pumped into the system. Anti nausea drugs allowed be to continue work throughout the summer and Fall. In January of 2005 my family doctor suggested she remove a few suspicious looking moles. One came back insitu malignant melanoma. She removed it in its entirety and life is going on.

Life Now: Since losing my leg to bone cancer I have lived an incredible life. I married my boyfriend who helped me through those difficult years; I have two wonderful, grown, healthy children, experienced the thrill of winning a national downhill skiing championship; I participate in many exciting sports including kayaking; water skiing; swimming; sailing; biking and so on; I have founded a number of organization supporting children and adults with disabilities and worked with local cancer programs to support newly diagnosed cancer patients. Every goal achieved contributed to my well being and health. Not every day was easy, but I can look back and say every day was worth while…and not only for me.

It is summer again, I am back on the water enjoying my new found passion – kayaking – and focussing on my latest goal… a fund raiser I’m organizing this August for the Assistive Technology Centre, a registered charity I run for children and adults with disabilities.

Thoughts and Hints for New Patients: There is no doubt that cancer has shaped my life. However, cancer doesn’t control my life… its challenges, and its consequences, have made me achieve a higher level of living. I simply would not have been the same person if I had not had cancer. Any challenge can do that, if you look at that challenge from a different angle.