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 Mass |
| Retroperitoneal Lymph Nodes |
| Left Hilar Lymph Node |
| Right Hilar Lymph Node |
| Aortopulmonary Lymph Node |
| mediastinal lymphadenopathy |
| Left lower paratracheal Lymph Nodes |
| Left para-aortic lymph node |
| Right periaortic lymph node |
| Anterior right periaortic lymph node |
| Inferior right periaortic lymph node |
| Inferior left periaortic lymph node |
| retrocaval lymph node |
| Right Pericaval lymph node |
| Pretracheal 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.