Jan 27, 2014 - 12:53 pm
I am new to this forum. I was on another forum off and on since 2007 but I can't find it anymore and am so glad to find this one!
Short version of my story:
June 2007 - 15.5cm RCC RIGHT kidney. / 1.5cm mets to right lung. Age 49. Both resected (radical nephrectomy) at Lankenau Hospital in suburban Philadelphia. Took Sutent 37.5mg for 8 rounds as adjuvent therapy through Keith Flarrity at Univ of Penn Hospital in Phila. He has since moved to Boston and I have seen Naomi Haas at Penn ever since.
Summer 2011 - tiny lung spots started appearing (1.5-2mm each). Oncology and family doc both want to watch and wait... repeated scan since then show them slowly growing each tie but still very small (about 5mm) Way too big for MY LIKING.
March 2012 -Open Partial Nephrectomy for 2.4cm RCC in LEFT kidney, first seen on November 2011 scans but watched for 3 months to be sure it was growing / a true risk before cutting into my only kidney. Surgery was at Fox Chase Cancer Center by Robert Uzzo - at Dr Haas' recommendation.
NOW - January 2014 - new scans show:
- lung spots as mentioned above are now 6 in number and about 5mm each
- NEW (2nd time in my only remaining 90% of a kidney) 8mm assumed RCC. Dr Haas seems to think surgery is no longer wise since I will continue to form tumors in that kidney (apparently) and they can't chop it up too many times.
- NEW 1.5cm PANCREATIC mass - Radiology is saying it's "Islet Cell" which I looked up - can be benign or malignant.
Dr Haas is doing some investigating with her collegues but preliminary thought was votrient - she is running a trial. I could also get votrient without the trial. I am unsure if her being the principle on this study slants her recommendations... :-( Why not surgery for the pancreatic mass?
They also think now I might have the vHL trait. I thought I was tested as negative back in 2007, but maybe I imagined that. Sickened by that possibilty for my two daughters sakes.
Feeling like I just received a death sentence. Any recommendations or encouragement appreciated.