CancerCompass message board discussion started by Fivewould on 12/31/2007 http://www.cancercompass.com/message-board/message/all,19262,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ If you've had CT Scans and had difficulty getting consistent Radilogical  reports, then you have experienced some of my frustrations.    I was diagnosed in Oct 2005 with RCC Stage 3B (Distant Mets). I had a large tumor in my right kidney (that extended well into my Vena Cava) and a very small tumor on my right adrenal gland. I tried Nexavar but it didn't work for me. I went to Sutent, and it stablized me for 15 months. Then we saw progression (Pleural Effusion in left lung).  Now I'm on a Chemo mix of Xeloda, Gemzar, and Avastin, and I'm stable.   Here's the problem. While on Sutent, I got a CT scan (Chest, abdomen, and Pelvis) every 6 weeks, and now I get one every 8 weeks.  My oncologist is affiliated with a large hospital in St. Louis, with a large Radiology Dept. Each time I get a different Radiologist, who reports the tumor and lymphnodes differently.  Usually they just report what changed from the last review, but, as someone with a large number of lymph nodes that are affected, I cannot believe that there are NO CHANGES in them after they were first reported. I tract the reported results and measurements in a spreadsheet, and it is shocking how inconsistent these medical professionals can be in their analysis. Here is a list of the lymphnodes (and single tumor) they've mentioned (but usually not more than a couple times) over the past 18 months:  Right Adrenal MassRetroperitoneal Lymph NodesLeft Hilar Lymph NodeRight Hilar Lymph NodeAortopulmonary Lymph Nodemediastinal lymphadenopathyLeft lower paratracheal Lymph NodesLeft para-aortic lymph nodeRight periaortic lymph nodeAnterior right periaortic lymph nodeInferior right periaortic lymph nodeInferior left periaortic lymph noderetrocaval lymph nodeRight Pericaval  lymph nodePretracheal lymph nodes  Their diagnoses are so incomplete and inconsistent, my oncologist is embarassed, and he agrees with my frustration. He has no suggestion on how to address it other than contacting the head of radiology. Have you had similar experiences?  Do your CT Scan reports give you precise measurements for each existing site?  Please let me know.  I'd like to know if this is an industry standard approach, or an anomoly in this department. Thanks !D. J. in St. Louis. Fivewould Mon, 31 Dec 2007 00:00:00 GMT Unfortunately not uncommon!  We were led to believe my mother only had 3 tiny tumors left on her liver and come to find out that there are more than 3 (never been told an exact number) and that the radiologists sometimes dont mention tumors that are under 2cm because sometimes the ones that small arent even picked up by the CT.  It seems that when your life is on the line, they should measure every single tumor that they see regardless of how small it seems to them.  Every dang tumor starts as just a few cells!  They keep saying that she has had 30% shrinkage with each of her CTs but, geez, how can you feel confident that they are even reading it right???  It is frustrating and I seriously dont understand it, but i have absolutely NO idea of what to do about it!!!  I guess we are at the mercy of the radiologists. Cpurd Tue, 01 Jan 2008 00:00:00 GMT It would be my opinion that your oncologist should demand to any extent possible that the head of the department do the reading and supply him with the results of each scan.  Do not leave it to a new radioliogist or be content with the inconsistencies.  You are the paying patient and your test results are critical to your treatment decisions.  Do not allow others to report, hold a single professional responsible for their function!!! momwithkids Tue, 01 Jan 2008 00:00:00 GMT