Osteosarcoma at the Humerus
Age at Diagnosis: 15
Date of Diagnosis: 1988
Location: Washington D.C.
Hospital: Children’s Hospital
Diagnosis: In June of ’88 (when I was 15 years old) I’d been having pain in my left arm — I thought I’d been hit by a softball and that’s what was causing the pain. Luckily, we were sent to Children’s Hospital pretty quickly and within just a couple of days I was diagnoses with osteosarcoma of the left humerus.
Treatment: I had 2 rounds of pre-op chemo (cisplatin and adriamyacin), following by an 8-hour limb-salvage operation where they removed almost my entire humerus and replaced it with a metal prosthesis. They rearranged all my muscles and removed the deltoid muscle. 4 more rounds of chemo followed.
All was well for almost 2 years — then I got the dreaded recurrence to the lung. They removed one thumbnail-sized nodule and I had an additional 10 rounds of chemo (Vp-16 and ifosphomide). Then, I went to MD Anderson in Houston and did an experimental treatment called MTP-PE that utilized the body’s own immune system to fight of cancer cells.
Recovery: I’ve had my share of scares (something showed up on alung CT about 5 years ago that ended up going away on its own). Had a scare at the beginning of 2008 with really bad arm pain, but it’s subsided. (It was most likely due to lifting my 14-month-old son regularly!)
Life now: I’ve been cancer free since 10/1990 and off all treatment since June 1991. I’m happy, healthy, married and have a 1-year-old son (conceived naturally — after one month of trying (I was sure I’d end up with some medical intervention given all the chemo I had).
I still have issues with doctors and hospitals and get anxious with every pain and chest X-ray I need to have.
Thoughts and Hints for New Patients: – Don’t be afraid to question doctors. They are not infallible.
- Learn how to work the system. If you’re not getting the answer you want, look elsewhere. My mom was able to get me a drug that helped my immune system bounce back by contacting people she new at NIH along with our congresswoman.
- Kill them with kindness. You’ll make a lot more progress if you’re nice to people — and learn everyone’s name — even the X-ray techs — you’ll be seeing them a lot. You never know when you’ll need a favor.
- Keep your own records. My mom kept detailed records during my admissions of when I got medicines and my blood counts. She knew when I was due for doses and got on the nurses ahead of time.