Summergirl Posted February 8, 2004 Share Posted February 8, 2004 Hi everyone, this is Kelly, whose Mom has been undergoing tests at Emory in Atlanta all week. Okay, what was supposed to be the week of answers is now the week of still no answers. My Mom originally, in 12/03, went to hosp. w/flu. Found nodes on CT scan of chest, did bronchoscopy which came back positive NSCLC. The nodes were in the mediastinum, and right paratracheal. It was a very unusual presentation we are told, so the onc. sent the slides to Mayo to confirm. Which they did. The onc. calls it inoperable, can't be radiated, and she can have chemo now or wait(?) He calls it stage 4. We come to Emory for 2nd opinion. And are told that the nodes have shrunk (w/no treatment) so we are now on a hunt to find the primary tumor. Nodes shrunk, but still show lymphadenopathy-whatever that means. We were set up for selective bronchoscopy, brain MRI, spiral CT w/thin cuts of chest and abdomen, and surgery to remove an ovarian mass for biopsy. And this has been a long week. Ovarian mass is just scarring, no cancer. 8 samples from the bronch. show NEGATIVE. Brain scan normal, and we are waiting to hear on CT of chest/abd.-which is sitting on the computer but can only be given to us by the doctor that ordered it. Other doctor (the gyno. surgeon) has read it, and did not tell us of any great findings on it. One resident doctor of his read it to us, but we couldn't take it all in at 11:30 at night. It did note the bilateral nodes that were spoken of previously, but said the previous CT was not available for comparison. Basically, no cancer in any of the new tests this week, pending doctor clarification of the CT that we don't have a copy of. The pulmonary physician says this can happen where you can get negative biopsies when cancer is early stage and you aren't finding the right spot to biopsy. The cancer is still there and will be found, just requires more tests. We wonder, what the heck? Were the original slides mixed up w/someone else-which they say not likely that would ever happen (less than 1% chance). Nice try though, don't you think? One question I'd like to ask you guys, the original bronchoscopy was not a selective, just a standard if that's what you'd call it. And it found the cancer cells through brushing and washing-confirmed by Mayo. The mediastinal nodes have not been biopsied yet (that's probably coming up though). My mom had been coughing violently w/the flu for several days before December bronch. And this is probably a really stupid question, but I'm overtired and haven't slept while staying w/her at hospital. But, could she have coughed and gotten the cells stirred and then they got them by brushing and washing? Or do the cells stay in one place and you have to go right where they are? The rantings of a sleepless maniac here...anyone ever heard of them not being able to find the cancer source right away? Promise not to hold you to it either! We just keep being told it's an unusual case. And looks like we will be having more tests. Thanks for listening, I know you all understand the confusion you can feel. We had really hoped to have the answers and a treatment plan by tonight. Kelly Quote Link to comment Share on other sites More sharing options...
karenl Posted February 8, 2004 Share Posted February 8, 2004 WHOA!!!!! Kelly, what a lot to try and take in!!! Personally, none of it makes any sense to me, so I'm afraid that I can't give you any further info, although I am sure there are many here who can provide their valuable expertise in the area! I DO know what it feels like to be waiting on results for staging/treatment purposes - it really really SUCKS! My heart is with you all, and I am hoping for the very best outcome. Keep us posted. Karen Quote Link to comment Share on other sites More sharing options...
Guest Karen C Posted February 9, 2004 Share Posted February 9, 2004 Kelly - try posting this in the General forum, too - to get more people to see it. I think you have a good question here. I mean, the whole situation sounds like a good question. Unfortunately, I have no answers for you, but have they done a bone scan and a PET scan - at least a PET scan? Maybe a PET scan would light up all the cancer spots and give them a better idea where the primary is? Keep us posted and I hope your mother does well and gets over that nasty flu stuff, too. She is very young at 59! Karen C. (David C's wife) Quote Link to comment Share on other sites More sharing options...
john Posted February 9, 2004 Share Posted February 9, 2004 lymphadenopathy just means enlarged lymph nodes. Not sure if this would apply to your mom, but have they every brought up a Mediastinoscopy or even a PET scan (though PETS do not always find everything and sometimes there are false positives also) http://my.webmd.com/content/healthwise/48/11937 http://www.healthandage.com/Home/gm=6!gid6=7206 Also search on the web for "cancer of unknown primary" or CUP for short *maybe* and hopefully something was a false positive - don't know but guess there is always hope. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted February 9, 2004 Share Posted February 9, 2004 Kelly, Being diagnosed with cancer is rough enough without having to wait for answers. I am sorry that things are so complicated for your Mom. There is a condition called CUP-Cancer of Unknown Primary. Here's a link to info on CUP and how it relates to a possible diagnosis of Lung Cancer. http://cis.nci.nih.gov/fact/6_19.htm Hope you all have the answers you need very soon. Quote Link to comment Share on other sites More sharing options...
Summergirl Posted February 12, 2004 Author Share Posted February 12, 2004 Hi all, thanks for the responses. Frustrating situation to say the least. I am going to post this and more info fr. the last Dr appt in General, as Karen suggested. So an update will be there. Thanks so much for the links-and the info on CUPS. I had not read about this previously, and there are similarities w/my Mom's case and the article I read. Thanks again Kelly Quote Link to comment Share on other sites More sharing options...
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