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...
lilyjohn Posted February 13, 2004 Share Posted February 13, 2004 If they can't find it how do they explain saying that it is unoperable? Doesn't make much sense. If you read across this board you will see that three months is a very long time if it is cancer. Seems like by waiting it could become inoperable even if it isn't now. Maybe they need to do some other kind of tests. Just doesn't seem to add up right to me. Lillian Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 13, 2004 Share Posted February 13, 2004 I wish I had some kind of great advice for you...........I, too, need to go to med school to figure all of this out. It is so complicated and confusing. It is so hard to go through all of these tests and wait. This is the stage we are at with my Dad. I thought all of his tests were done............nope, still more. Three months sure seems like a long time to wait to me. Is there anyone else that your Mom could consult with. I am in Alabama and I know that Emory is a good hospital but................still three months seems like a long time. Sorry that I couldn't help, but I will be thinking of you and your Mom. Have a blessed day! Angie Quote Link to comment Share on other sites More sharing options...
natalie Posted February 13, 2004 Share Posted February 13, 2004 Kelly, You probably have already done this since you are getting 2nd opinions, but I'd make sure you have a copy of all pathology reports, doctors notes, everything you can get. Print up anything you read that may help and show it to the doctor and keep asking questions. Sometimes I would ask questions afraid of how the doctor would react (offended or attacked) but a lot of times, I would be told "That's a good question..." and I'd get a pretty logical answer. Tell them about that website you read about. Good luck. I'm so sorry that you have to go through this. It just plain sucks. That's the only word I can come up with to describe what we all have to go through...oh never mind...nightmare? B.S.? horrible? oh gosh, I can go on. Keep asking us questions, we'll do what we can to help. I know it helped me a lot in dealing with my mom's doctors. Quote Link to comment Share on other sites More sharing options...
john Posted February 13, 2004 Share Posted February 13, 2004 Here is another resource for path 2nd opinions - The armed forces institute of pathology is supposed to have some of the best there. http://www.lungcanceronline.org/care/secondop.html Quote Link to comment Share on other sites More sharing options...
paddy Posted February 14, 2004 Share Posted February 14, 2004 Hi There Kelly, I think anyone would be mixed up in this case! Sounds as if the doctors are as well. I agree, with the others, gather all the records , take them with you to the next appointment and ask for explanations. Good Luck to you and your Mom. Love, Paddy Quote Link to comment Share on other sites More sharing options...
Summergirl Posted February 14, 2004 Author Share Posted February 14, 2004 Thanks everyone, for the advice, support, and links. We do get copies of everything, all reports and sometimes I have to press for it too. I am having to kind of sit back a minute, my Mom is very tired and stressed. She is not right now interested in talking about should we wait or go somewhere else. She just heard the Emory doc say that they may not see cancer cells and that's what she wanted to hear. Lillian, what I understand about the inoperable part is that the nodes, tumors, are spread out, and some in the mediastinal area, and affect both lungs. They appear and some shrink and some stay the same. And that's why they can't operate. Or do radiation either. Also told the nodes are "too small and difficult to get to" to do a mediastinal node biopsy. Since the docs at Emory have now had their pathologist say maybe cancer, maybe not, on the original slides, they aren't recommending anything right now but wait. As of right now, my Mom doesn't even have an appointment w/her main oncologist again until April. But the pulmonary doc wants to see her in a couple weeks, so I am bugging her to make this appointment and I can question him some more! Yes, very confusing and stressing. Glad you guys are here to hear my vents! Kelly Quote Link to comment Share on other sites More sharing options...
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