May 30, 2013 - 9:14 am
Really glad to find this forum. In brief, I was diagnosed in October 2008 and underwent a partial nephrectomy. After two years and some severe backaches, my annual CT Scan in 2011 showed that the RCC had spread to my adrenal gland and to my spine (golf ball sized tumor on my sacrum or tail bone). Two spinal surgeons determined that the sacral tumor is inoperable and I underwent 30 sessions of radiation therapy. The sacral tumor also has had some serious neurological consequences including loss of bowel control and most recently (January 2013) I found myself unable to urinate, and I have had suprapubic foley catheter installed. All this time I had been taking Sutent with severe side effects. My medical oncologist scheduled more scans early this month (May 2013) and found that presumably the RCC has spread to my lungs (numerous tumors ranging in size from 5 to 9 cm) and the tumor on my adrenal gland has grown by about 70%. The Oncologist is now trying me out on Afinitor.
I'm really concerned that I'm doing all that I can to treat this thing. The Radiation and Surgical Oncologists have both said they can't do anything more. The medical Oncologist says he will keep trying. Even though I don't have anything specific, for some reason I don't trust this guy. Is the Afinitor course of treatment the only strategy? My wife thinks I'm getting the right treatment, but I'm not sure. Can a well known hospital like Johns Hopkins, Mayo Clinic, or even the well advertised Cancer Treatment Center of America do a better job? Regardless, it looks like I will be on treatment for the foreseeable future. So far, I have gotten many opinions from Doctors, nurses, family members and friends on what I should be doing. I would really like to know what those current RCC fighters think.
Thanks for reading.