Apr 08, 2012 - 11:23 am
As I've stated before, I find this site extremely informative and helpful. It's the place I run to when I feel overwhelmed and spewing with questions, and it's a Godsend.
One thing I question, though, in the spirit of each individual taking control of his own health, is there any site or collection area of a site that builds a voluntary data base in respect to kidney cancer patients by perhaps using survey monkey or some other questionnaire form. The questions I'm talking are questions about activities, food likes/dislikes, geographic information, as well as kidney cancer grade/type/stage, medications/treatments utilized, etc. I've never seen anything like that and maybe it's not practical. Or maybe it's out there and I just haven't found it.
I understand medical information is private and it would have to be on a voluntary basis, but as a Grade 4/stage 4 patient, my husband would be willing to compare notes with anyone. He would not even have a problem posting his pathology report.
If I'm talking crazy,just tell me. It just seems to me the medical world's focus should be broader comparing similarities and disparities, trying to find common denominators for this disease, and if this is happening on a broad base, I've never seen it.