Summergirl Posted February 13, 2004 Share Posted February 13, 2004 Hi everyone. I will try to make this short, but it's just a huge story. If you read in my profile, you will see that we have been on quite a rollercoaster with my Mom through her testing/diagnosing procedures. So now we have a total of 5 pathologist that have looked at her original bronchoscopy slides (when NSCLC was diagnosed). The original 2 path. from the first hospital, who then sent the cytology to Mayo for confirmation due to the unusual presentation. 2 path. at Mayo confirmed. My Mom has nodes, bilateral, and in the mediastinum that seem to show up, then recede. Almost like they move around in between scans, or shrink and grow btw. scans. They are too small, and in places that aren't ideal for needle biopsy we are told. We go to Emory in Atlanta for 2nd opinion. And none of the procedures they perform, including a second bronch. show cancer. Pulmonary surgeon says this can happen. Sometimes you get negatives following positives while you are searching for the primary tumor. You keep looking and you find it. She has 1 cyst like structure in her liver, and one in kidney. Scans on this say appears to be cyst but malig. can't be ruled out and to keep following up. The doctors don't seem too concerned about these. Emory pathologist sends for original slides (that went to Mayo) and-drumroll please-says well, maybe cancer, maybe not. We are told to go home and recuperate from the ovarian surgery and biopsy procedures, then come back in 2 months for Spiral CT on chest and bronchoscopy in 3 months. This followed by: if this is cancer then the way it is presenting is not operable and not able to radiate. It is bilateral and multiple nodes involved. Chemo would be treatment option, but is not a cure. So waiting a couple months is not going to affect treatment plan. Which is what the first onc. said, although he had no doubts that this is cancer. Huh? Now I'm confused. Are all these pathologist looking at the same thing? My Mom has now decided that her original samples were somehow tainted so were read incorrectly. Okay, indulge me here-has anyone ever heard of samples that were somehow tainted? Like they don't sterilize tools or follow protocol while packaging the samples? I can hardly think that could happen. This was all just yesterday, so I am still absorbing this. But is this back and forth a common thing? I can hardly think that 2 pathologist at Mayo would get this wrong-that was the whole point in sending the samples to Mayo. They saw the same thing as the original 2 pathologist-NSCLC. Any thoughts on this? I have posted to the test/results forum previous to yesterday, and was given a link regarding CUPS (can't find primary source) which was very informative. This was not even mentioned by any of the doctors. I think I need to go to medical school to understand all this. Thanks for being here, and thanks for sharing. You are all such a comfort. Kelly Quote Link to comment Share on other sites More sharing options...
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