jamie Posted May 13, 2004 Share Posted May 13, 2004 OK guys, here it goes.... Last week, we were all on cloud nine... After being told from the beginning that my dad was operable...than not... then yes... ect... we thought we finally got a straight answer last week. Some of you guys probably read my post that my dad was going to go in for tumor removal by the end of the month. We were so glad. After chemo and radiation for 3 months, they did a PET scan, and found no cancer left in his lymphnodes! They reffered him to a surgeon, and told him to start preparing for surgery... He met with the surgeon yesterday and was knocked on his butt. The surgeon told him he highly doubts that he is operable, because it was "just a pet scan", and noone should have given him false info. or hope. He said my dad needs a biopsy on the lymph to say for sure. (Which we knew), but my dad's radiologist was so pleased with my dad's PET scan results, and said the biopsy was just to make sure. He was so convinced that surgery would be before June!!! The surgeon said that noone screwed up, its just a difference of opinion, and the biopsy is scheduled for next thurs., but here we are again at the bottom of the valley, when we were on cloud nine, just last week!! Why would this happen??? How could things get so screwed up??? I wonder who is at fault here, the radiologist for getting us all excited, or the surgeon for being so negative. I guess we wont know for sure who's right or wrong until next week, but I feel so defeated. Just when I think we are so lucky, and so blessed, we get knocked back again... Does anyone know of a PET scan giving a false negative??? The surgeon seems to think it may have. (without doing any tests) What do you guys think about all this??? Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 13, 2004 Share Posted May 13, 2004 SECOND OPINION!!! (That's my immediate thought...now on consideration...) *Line up a second opinion, consider changing surgeons/doctors. *Question on negative PET scans being wrong...MY oncologist (remember, I live in "Podunk", not someplace with a big cancer center) said that there are false positives, but not false negatives with a PET scan. Not sure how that is, but that's what I was told. *Daddy's "dancing" the Hi-Lo dance is SOOOO wrong and I feel so bad for him. This is just not acceptable... *Still on that second opinion idea...or third. I can understand a doctor wanting to "be sure", but this dude...hmmm... Luck to you, Becky Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted May 13, 2004 Share Posted May 13, 2004 i have heard about the false positives on PETS but not false neg's but I guess anything is possible in the "science" of cancer. i am only speculating but maybe the surgeon is just more of a "glass is half empty" and the other guy is "glass is half full" don't go all the way down until the biopsy, maybe it will be what you all have been thinking this week. try to hold on to the good news. Quote Link to comment Share on other sites More sharing options...
karenb Posted May 13, 2004 Share Posted May 13, 2004 Hey Jamie I posted a reply to your post on dad being able to have surgery and I just saw this post so here I am again....As I had posted before, my dad was in your dad's identical situation so it has now been 2 1/2 weeks post surgery for him and I'll tell you in a nutshell how it happened for him... First of all, do not give up hope whatsoever on this because he may still have good things ahead for him. We didn't know if they were going to be able to do surgery on my dad either until he was prepped for the mediastinoscopy (biopsy on lymph nodes). We had to wait in the waiting room to find out whether or not they would proceed with surgery of the lung tumor removal or not. This is apparently not an uncommon procedure at all. Like you, our surgeon and pulmonologist was not too encouraging but the oncologist was a little more encouraging though. He had a good PET scan , just like your dad but they were still not going to be convinced until they got in there and saw for themselves what was going on in those lymph nodes that were once glowing and active but didn't appear to be anymore. So we didn't know if they were going to do "surgery" until the day of "surgery". So much to the surgeon's surprise he was able to proceed w/surgery but we/he didn't know until literally the last minute. So don't be discouraged at all they just need to be prudent and make sure everything is where it needs to be before they unneccesarily put your dad through this very painful surgery for nothing (meaning if he had active cancer outside the lung, the surgery does not really help him because it has already spread.) On another note however, my dad had a good PET scan before surgery except for a pinpoint dot on his lung in which they intended on removing in surgery (if his lymph nodes in the mediastinum checked out which they did) but we just got the pathology report back from the surgery in which they took his entire lung out (unexpectedly)as well as grabbing some surrpounding lymph nodes and much to our dismay one of the nodes came back POSITIVE!! This node did not show up on his PET scan so there ya have it sometimes things don't show up that should show up!!! That is why it is a good thing that they do the biopsy first because they can never be too sure you know what I mean. I think they are doing the right and prudent thing for your dad on this and I also think that you and your dad have good reason to be optimistic too.. really. It's just so hard because it's a waiting game...that being said though take heart because things are looking pretty good for your dad.!!! Quote Link to comment Share on other sites More sharing options...
natalie Posted May 13, 2004 Share Posted May 13, 2004 I agree with getting a second opinion Jamie. This is an important step in this battle against cancer and I would do everything possible to see if your Dad can be operative. I'm so sorry that you have to go through this rollercoaster ride. Your in my thoughts. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted May 13, 2004 Share Posted May 13, 2004 Jamie, Don't be discouraged because the surgeon was negative seeming. He may have thought you were overoptimistic about the PET results, and went overboard to correct the impression. In any case, especially with the story about Karen's dad, I would not despair now. Likely they'll be able to do the surgery, they just want to confirm that the lymph nodes are good. Fortunately, the surgeon isnot the guy you deal with all the time. If you REALLY don't like him, find another surgeon, but good surgical specialists aren't that easily replaced. Discuss your discomfort with your oncologist, who is going to be your "rock" through treatments, and therapies through this thing. He may tell you this guy is actually dynamite, but hates to give people false expectations. XOXOXOX MaryAnn Prayers, always, for things to go well. Quote Link to comment Share on other sites More sharing options...
Ry Posted May 13, 2004 Share Posted May 13, 2004 When we were exploring whether surgery was possible the first surgeon said he was inoperable. Our family doctor's comment was that that particular surgeon was "conservative" and just because he wouldn't operate, it didn't mean someone else wouldn't do it. So if that surgeon is "conservative" get a second opinion. Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 13, 2004 Share Posted May 13, 2004 SECOND SECOND SECOND SECOND OPINION IMMEDIATELY! I have learned and have been told taht surgeons think different from oncologist and all doctors disagree. Do not hop off of the cloud 9 just yet. And don't go to a valley. PIck a platue instead I was in your same exact boat. I remember responding to one of your posts before and saying my family is a few months ahead of your family timewise line. So here is what happened which sounds just like your situation. At diagnosis we saw a well-respected pulmonologist who said there was no hope; my mom would not tolerate surgery; surgery was impossible; the best we could do is some chemo. His first step was a needle biopsy and sleep apena tests to see how she could tolerate being put to sleep. My boss at work was like no no, and hooked us up with a surgeon at Cedars. We went to see him and it was like a total reversal. He was like we can probably shrink it and then cut it out. He wanted a mediastonoscopy. He was positive. I politely called the other dr and said we were going with this one. He threw a FIT, he called the Cedars dr after I asked him not to and ranted and actually told me he did not think my mom would live after teh procedure. Got over the dr anger, realized each dr is different, went with the second opinion and surgery was a success I have heard of false positives, but not negatives, although I guess it is possible. I heard of false positives b/c sometimes the lymphs get inflamed and angry, but not cancer. And one thing also I learned is that they don't know for sure until they get in there and look at the lymph---at the mediastonoscopy they took out some positive ones and they thought a few more were positive. Either chemo got rid of it or it was never positive. When are they doing the biopsy? Oh, and one more thing Cedars told me b/c I was confused, they typically tend to "overstage" at first to be cautious, but they really don;t know till they go in. Quote Link to comment Share on other sites More sharing options...
jamie Posted May 13, 2004 Author Share Posted May 13, 2004 I want to thank everyone so much for their insight into all of this. Time and time again, i feel like i keep getting hit by a brick, and after recieving your posts, I feel better. I know that the doc, is probably being cautious, to not let us crash and burn if something dosent work out, but still. Im anxious to find out and scared too. CHLOESMOM....if you read this... PM me soon, im dying to know what you think of all this!!!!! Again, thank you and ill let you all know whats going on as soon as we figure it out. jamie Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 13, 2004 Share Posted May 13, 2004 Jamie, My heart goes out to your Dad, you and your whole family. I don't understand it either, and so I posted a whole "rant" about it asking why some get surgery and some don't under what seems to be similar circumstances. I do think that the PET is still what you need to hold onto. Love Elaine Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 13, 2004 Share Posted May 13, 2004 Jamie: Sent you a PM just now--in reading over these responses here, I think a lot of the folks have valid points--especially karenb's story and Ry who said that maybe surgeon is being conservative. If this is the same one that did my surgery, he is known to be conservative and probably would never want to put someone through that kind of surgery without knowing about that lymph node for sure. This is major surgery we're talking about and recovery is tough--there is no excuse for doing it for nothing, and he never would. Also, please don't dump him because he's not very friendly--sometimes I think that's just the nature of surgeons--but you don't want a friendly surgeon who doesn't know what he's doing. My PM also had some of the hospitals that I may get a 2nd opinion from--has your dad had a pulmonary function test yet? If not, I suppose they'll have him get one before there's any decision to do surgery or not. You can't risk leaving a person with not enough pulmonary function left to move around after surgery. Please, please keep in touch either on the board or by PM--you and your dad and those three adorable kids of yours are in my thoughts all the time.... Quote Link to comment Share on other sites More sharing options...
Jana_W Posted May 14, 2004 Share Posted May 14, 2004 Hi Jaimie It is definitely possible to get falst negatives on lymph nodes from PET scans. Please have a look at the following article which explains this. http://articles.findarticles.com/p/arti ... i_92133029 It is hard when everything is so up and down. I am thinking of you and please keep us updated on how things go. Jana xxxx Quote Link to comment Share on other sites More sharing options...
osirus226 Posted May 14, 2004 Share Posted May 14, 2004 Jamie, I know Im a little late here, but I just wanted to send my thoughts and prayers to you and your family. I am hoping that you get some good news and straight answers soon. Keep your chin up Quote Link to comment Share on other sites More sharing options...
karenl Posted May 14, 2004 Share Posted May 14, 2004 Hi Jamie I remember when Mum was going through the staging process. She had a pet scan which suggested there were mets in the mediastinal lymphnodes and possibly one rib. A bone scan was undertaken to determine if there were, in fact, bone mets, and the radiologist subsequently told my parents that he did NOT think the rib was a met, but rather some benign trauma like a fracture. Mum's case was 'conferenced' at the hospital by a panel of 'experts', who felt that the overwhelming likelihood was that the rib WAS a metastasis, and mum should be treated as stage IV. In the end, it was decided to remove the rib and analyse it. Unfortunately, following a very painful thoracotomy, Mum's pathology results confirmed the stage IV diagnosis. So, she had that diagnosis to deal with on top of recovery from major surgery! At the end of the day, some practitioners will be pessimistic, and some will be optomistic. But the condition IS what it IS, and your father needs a clear cut evidence based diagnosis, which is hopefully what the biopsy will deliver. His surgeon's gloomy approach might be irritating, and demoralising, and I am certainly not in favour of doctors who take hope away from their patients, however, the test results will hopefully show what is going on, and the surgeon's attitude certainly cannot affect those!! Wishing you all the best Karen Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Author Share Posted May 14, 2004 Hi everyone, My Dad is gonna go through with ANY tests needed to distinguish what IS going on or better yet what IS NOT going on. I just wish for my Dads sake the surgeon would have been a little easier with his words. Facts are Facts, but I think too that there is a way of speaking to soften the blow. Guess this guy is just down to business...but like chloesmom told me... the surgeon is there to make my dad cancer free, not to make him feel good. We will just have to wait and see I guess. THanks everyone again Jamie Quote Link to comment Share on other sites More sharing options...
john Posted May 14, 2004 Share Posted May 14, 2004 The PET scan is roughly about 90% correct. There is only a 10% or so chance that it there will be cancer. Praying you can have your operation. It is good the surgeon is being thorough. Most surgeons don't have the best bedside manner. Where is the lymph node exactly? Surgery can be done if it is a hillar lymph node (below the mediastinum) Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Author Share Posted May 14, 2004 John, Wish I had more info. I know the lymph.'s infected in the beginning were ones that couldn't be removed, but since they came back clean, they were going to go ahead and go through with surgery. It was only after we met with the surgeon that he brought up the initial "light up" in one lymph. on the opposite side of the tumor. They checked it at the onc. office, both the onc., and radiologist thought it to be nothing, sent him to an ear, nose and throat guy, who agreed it was nothing. They decided to give it full direct radiation along with his tumor as a "percaution". After all that, another PET scan revealed that it was completly gone, so noone including us thought anything about it after that. The surgeon brought it up and wants it checked before not during surgery, so that is what started this all... not sure what to think. I guess the best thing is that even though they thought it was nothing, they radiated it just in case. Thanks for all the good wishes Jamie Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 14, 2004 Share Posted May 14, 2004 Jamie, I so feel for you. I HATE the waiting game. With my mom it was like is she getting surgery, isn't she, what does PET say. Even when I thought we were all set, oncologist said surgery is a go, Thoracic Surgeon said ok, it hopefully will be a go, but we need another PET and Brain MRI before we can schedule. I said she had one not too long before that, maybe 4 months. He said I know, but we need to make 100% sure before we do the surgery. So it was like waiting and waiting for those tests. It felt like an eternity, but it was just a week. The doctors need to be overly cautious. Does he have anything scheduled coming up? Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Author Share Posted May 14, 2004 Andrea, He has a CT scheduled for Mon, and a Biopsy of the lyph.s, scheduled for Thurs. I guess the surgeon is pushing for the CT most importantly. I posted under TestTime/Results about what the difference is between a PET and a CT, and got some info. but still not real clear. I guess he just wants to be 100%sure. I keep feeling like if they keep digging, they are gonna find SOMETHING. But i also know that it is best to be sure.... I guess it will be like 2 weeks till we know anything for sure.... SUCH A LONG WAIT. Anything I should be asking before the biopsy???? Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 14, 2004 Share Posted May 14, 2004 How are they doing the biopsy? Is the surgeon doing it? There are diffrent ways, like just a needle biopsy. With my mom, they did a procedure called a mediastonocopy to biopsy it and if it was negative they could jsut continue with removing the lung. Difference between a PET and CT--CT picks up big stuff and focuses on areas. A PET scan is almost like a full body scan, if there is any cancer throughout the body,it lights up like a Christmas tree on the scan. That is why they do the PET before su rgery, just to be sure. The oncologist was positive on my mom it would be negative, which it was, but the surgeon insisted on it. Why will it be two weeks? If you can, try to push for CT results sooner. It bothers me so much b/c they know right away, a radioligist immediately reads it If you keep calling and calling and be really nice about it, explain that you have one dad, even cry, they might get back to you. I honestly did not mean to "manipulate" when we had some recent tests, but I was truly physically shaken and we found out. I like the clear PET. that sounds very hopeful to me. Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Author Share Posted May 14, 2004 Andrea, My dad likes to wait to get his results at an appointment so the dr. can explain stuff, maybe thats why it is taking so long. Im not sure how there doing the biopsy, but i know that they are putting him out. His surgeon must be doing it because he said he wanted to get familiar with his case so that is why they are doing it at his big hospital, instead of my dad's little one where he gets chemo. Why the need for the CT if the PET came back clean....dosent the PET light up for every little thing??? Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 14, 2004 Share Posted May 14, 2004 I think the CT is double security and also CT shows exact position of tumor in lung. The pet just shows "hot spots". That is good taht the surgeon is doing it, that is what they did for my mom too, the surgeon did the biopsy so they were "familiar" with her chest Your dad wins a prize, he is a good boy! And probably the smart thing is to wait for the dr to explain it b/c sometimes you can get caught up on words in a report and don't understand them. My husband is on your side. My two bosses, my husband and my dad, have conflicting views. Brian HATES when I push to get results sooner b/c sometimes I have questions and then I will be trying to get answers. My dad LIKES to know immediately. My mom is middle of the road Usually I sawy Brian is the boss, but sometimes I cannot help myself to know. Although, like I said, I do have an "advantage" in where I work, there are medically knowledgable people here who I immediately show reports to. I know the waiting game is the absolute worst. I am praying for ya. Quote Link to comment Share on other sites More sharing options...
dave s Posted May 14, 2004 Share Posted May 14, 2004 Jamie, My take on the PET VS CTs is this: They look at completely different things. The CT is like a series of very focussed xrays and shows differences in tissue texture. For instance, in my case it has gotten to the point where CTs are muddled by all the scar tissue left from what used to be active cancers. I still get the CTs because they are quick and less expensive, but they do have limitations. The PET on the other hand seeks to highlight tissues with higher metabolic rates. Cancers have this higher metabolic rate, but so do other tissues such as muscles after use, inflamatory processes and sometimes permanent but healed scar tissues. They way they try to identify the higher metabolic rate tissues is by having you fast to starve you of blood sugar and then injecting you with sugar which has been laced with a radioactive tracer of sorts. The "hungry" high metabolic rate tissues (like cancer) suck this up in a hurry. Then they scan you for the positron emissions which occur as the "radioactive" tracer decays. The areas where this emission comes from are suspect for malignancy. That's why PET scans are so subject to false positives, because there are other reasons for tissue to have a higher metabolic rate. I always take anti-inflamatories for 2-3 days prior to PET scans to try to minimize false posititves. I asked a Dr about this and he said "yes, good idea". I should have asked him why he didn't tell patients to take them..... Dave S Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Author Share Posted May 14, 2004 Dave & Andrea, Thanks for the info... Im still not clear if he wanted the CT for the tumor or the lymphs. Noone has really mentioned the tumor latley, and last we heard it was small enough and in a location where it wouldnt be a problem....that said, it must be the lymphs that they are checking with the CT. His PET was less than a month ago and all was clear. The biopsy should tell us for sure too. Jamie Quote Link to comment Share on other sites More sharing options...
JonathanS Posted May 15, 2004 Share Posted May 15, 2004 Hi Jamie, If his surgeon is Dr. Marc Furgeson at Univeristy of Chicago, GET RID OF HIM NOW!!!! My mom had him and he sucks! His bed side manner is dispicable! He was so cold and rude! The rest of the oncologists there were wonderful, and up to date, but the surgical oncologist (Fergeson) was awful to her. I know you were taking dad there, so I just wondered. Try Northwestern and then Rush or vice versa as far as surgery for lung cancer goes. Just my experienced opinion. Good Luck...let me know...Jonathan Quote Link to comment Share on other sites More sharing options...
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