Before Johnna was diagnosed with synovial sarcoma, I never even knew such a thing existed. It’s a pretty rare cancer and sarcomas in general are under-researched, under-funded, and patients and doctors are fairly under-educated on the specifics.
According to the National Cancer Institute, synovial sarcomas account for 500-1,000 of the 10,000 sarcoma cases diagnosed every year. Contrast that with the 180,000+ new breast cancer cases, 185,000+ new cases of prostrate cancer, 215,000+cases of lung cancer, 54,000+ new cases of kidney cancer, etc. and you can tell that it is truly a rare cancer.
Because of its rarety it makes it quite difficult to research or to really understand much of what’s going on. She’s doing a clinical trial to try to find a stardized treatment plan for her type of tumor.
But we found out yesterday that, at least visably, the tumor appears to be growing, not shrinking. She’ll go in for an MRI on Saturday to see what’s really going on.
But it’s not a promising thing.
If anyone’s interested in her personal journey, she blogs at http://reflectionsoftheheart.wordpress.com.
Stronger than Sarcoma 