Elaine Posted May 13, 2004 Share Posted May 13, 2004 After reading profiles and posts for several months, I have seen a wide variety of people who are offered surgery and others who have had surgery not a possiblity--and there seems not to be parody. There are patients with distant mets at time of DX who have had part of or whole lungs removed, while most are told NO SURGERY. There are people who have surgery, lobes or lungs removed with more than one positive node, while others are told they can't have surgery if even one node shows cancer, like Jamie's dad who now has to have a biopsy of ONE node before he might be able to have surgery. There are people who have positive nodes and then after chemo, get surgery, Though it seems some people are told they can never have surgery even if the chemo kills the cells in the nodes. What is going on? I think I do understand that the position of the tumor and what organ etc it is or is not tangled up in does seem a logical reason to not be able to have surgery, but some of this other stuff does not seem as logical. Is it that some insurance companies have a policy that they will not pay for surgery if there are distant mets or a positive node or a once positive node?? Are there some insurance companies that will pay in those instances? I doubt that under any circumstance that my tumor was operable based upon several things, one being the lateness it was found. But I still just don't get it for other people. Maybe the surgery would not be a cure for all, but couldn't it prolong things? I mean they pump chemos into people and have chemos approved that add sometimes as little as a theoretical 6 weeks to prognosis, so why not surgery that could add years?? Can someone attempt an answer to this?? I apologize if this upsets anyone, but it is one of the questions I have been having for some time . Elaine Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 13, 2004 Share Posted May 13, 2004 Elaine, I don't have a full answer, but I was curious about that awhile back and did some investigating. Apparently it all depends what lymph node is involved. Our body is made up of tons of lymph nodes. Who was it, I think John, someone gave me a great website awhile back that explained how stages go depending on which lymph node is positive. So Stage II has just the immediate lymph involved, where as Stage III has more lymphs involved and more in the medestienal (middle of chest area). The surgeon's office told me that they dont know 100% until they go in which lymphs are positive b/c PET scans can give false positive on lymphs near the tumor just b/c they are inflamed. So basically, since I forgot all of the lymph node names and all of that, it depends on the location of the lymph node as to what stage and whether surgery is an option. Often times they now do radiation and/or chemo with surgery b/c if a lot ofl ymphs are i nvolved, there can be microscopic cancer cells that they try to kill. Can you imagine being an oncologist and understanding all of this with all the different types of cancer?????? So confusing Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 13, 2004 Author Share Posted May 13, 2004 Andrea, OK I will look into that--the location of the nodes and why that might make a difference. But you will have to admit, a brain or liver met IS a brain or liver met. Elaine Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 13, 2004 Share Posted May 13, 2004 Yeah, I was not talking about met outside chest. I was talking about surgery in general if there is no met. Sometimes with Stage III it just depends wehre the lymphs are. I still have not figured out why they won't do surgery if there is a met outside of the chest area. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 13, 2004 Share Posted May 13, 2004 Elaine-- I know that sometimes it is only after lymph nodes are removed during a surgical procedure that the final pathology comes back showing nodes positive for cancer--this is after the lobe is removed and the nodes are removed and all that's left is the staging. That's one reason why some people with positive nodes have surgery--it's not known until they get in there that the nodes are positive...... Quote Link to comment Share on other sites More sharing options...
cathy Posted May 14, 2004 Share Posted May 14, 2004 When my dad had his surgery he had no mets other than 2 out of the 9 lympth nodes that they took out.. however after surgery they staged him at a 3ab, still could never quit figure that out and they didnt know until they opened him up about the lympth nodes, could never figure that out either, I am not sure if I am helping or making this more confusing... Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Share Posted May 14, 2004 Elaine, Thanks so much for posting this for me. And thanks everyone for replying. I was thinking the same thing. Its all so confusing... Thanks again Elaine, and everyone Jamie Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 14, 2004 Share Posted May 14, 2004 Elaine, PRIOR to my surgery, the thoracic surgeon knew what KIND of cancer I had from the biopsy. From the CT scan, they knew about the size of the tumor. Prior to surgery, I was having the lower lobe of my right lung removed along with the tumor and some lymph nodes for testing...prior to surgery, I was staged as I, possibly II... During surgery, it was discovered that the tumor was actually between the mid and lower lobe of my right lung so both of those lobes were removed. Upon close inspection (no "body" in the way), the surgeon could tell there was something up in the lymph nodes and removed seven - this including the pair in the mediastinum. After the pathology report came in, I had positive nodes. Had it been just the ones closest to the tumor, I would have been Stage II...but NOOOOooooo, that pair in the mediastinum is the key to going from II to IIIa... ONE of those two was positive. I did not find out my stage until my first visit with the oncologist, I had assumed it was stage I, maybe II - when he told me what it was, I felt like someone had kicked me in the gut...hard. Some doctors, if they KNOW there is lymph node involvement will not do surgery until after chemo. I'm not sure what the "popular" and "most accepted" procedures are for what. I did not have a PET scan prior to surgery, just the CT. Seems that the "science" is not exactly perfected nor standardized. Can't explain it... But I know that in SOME hospitals, if it had been known going in that there was lymph node involvement, the story may have been different... (...sometimes, answers just bring more questions...) Becky Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 14, 2004 Share Posted May 14, 2004 Well, I can give you an answer in our case, but I hope it doesn't upset anyone. We were told by three different oncologists that the reason they couldn't remove the tumor from my husband's lung was because of his brain mets, of which he had many. They said that when it has gone to the brain, it means it's in the blood stream, and that surgical removal at that point has proven to not be beneficial in the long run, and therefore, it is pointless to put the patient through all the pain and suffering of surgery. I really struggled with how to word that and am about 1/2 scared to submit this because I don't want anyone to think that is or was a "give-up-on-them" thought. That is just not the case. The attempts with treatments, and his case very, very aggressive treatments real hard and real fast, were to knock out as much of the cancer that they could initially, and then to keep it down, and of course, hopefully, kill it off with radiation and chemo. Gosh, I'm sweating and sending this one with a prayer for God's blessing to be on it. Please, please, please understand that if your cancer or your loved one's cancer is "in the blood stream", that doesn't mean they won't survive. Remember, God is the one that makes that decision and NOBODY else. Love to all, Peggy Quote Link to comment Share on other sites More sharing options...
jamie Posted May 14, 2004 Share Posted May 14, 2004 Peggy, Thanks for the insight. The surgeon told my Dad yesterday that if his lymph. on the opposite side was positive, "God knows where else it went"... not the best way he could have handled it but at least he was honest. Dont think you should sweat it, honesty is honesty. I can appreciate it... Thanks again Jamie Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 14, 2004 Author Share Posted May 14, 2004 Peggy, Yes, I do know that unfortunate thing they say about distant mets. However, there are patients on this board who had brain mets and other mets at DXand DID have part or or a whole lung removed. Thus, since only a tiny per cent of all lc patients are represented on this board, I assume there are others like them. I also notice that these patients seem to live longer than the statistical numbers some oncs like to throw out. Again, I do not mean to be upsetting to anyone either, but I just want to get to the bottom of this, if it is possible to do so. Something does not seem right, and I do have some theories, but then again I am a person who does not believe that Lee Harvey Oswald acted alone, so what does that tell you?? I guess I think it must have something to do with cost effectiveness and pharmasuetical companies. Maybe surgeons need more lobbyists??!! If a chemo will get a statisical six week advantage, why not a surgery that may add a year or so advantage??? I am still looking into the node thing, too. I think this also came up for me, too, because today I was reading many cancer survivior stories, to try to pick myself up, and I noticed that many people who have other cancers with mets do get surgery, not only on their primary tumors, but often on their mets, as well. Maybe there are so many of us LC patients and the stigma of our disease, that treating us as aaggressively would cost too much and take many thousands more oncs. As DBerry likes to remind us, the US does not educate enough Doctors to take care of the current need in this county. ANd if the need were greater, how many more would be needed? Also, I don't think very many med students want to be oncs, from what I have read. Oh Ok, I should stop my wondering and arguing for now.. Elaine Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 14, 2004 Share Posted May 14, 2004 YES THE LAKERS JUST WON. DID ANYONE JUST SEE THAT 0.4 SECOND END???? OH MY GOSH!!! Anyway, back to the important stuff. Peggy, breathe and relax. You said it beautifully and exactly the way it is, or at least what my understanding is also. Once you have mets, they don't want to wait to kill floating cancer cells. They have to immediately start chemo and try to get rid of everything. If they wait to do lung surgery first, then chemo for other effected areas is delayed by like a month for body healing from sugery. So chemo makes sense to target everywhere, and/or radiation. Like Snowflake said, questions bring more questions and I have not read or seen or anything about which approach is more popular or accepted either. I really think it is like my mom's oncologist said, my mom is a guinea pig since all of this is new We had the opposite of Snowflake--my mom went in for a mediastonoscopy and we were told if any lymphs were positive they would close her up and do chemo before removing the t umor. However, if the lymphs are negative, she could expect to be in the hospital for a few days and have a lobe removed. It was positive, she was closed, had chemo, then went in again. I dont think there are answers. Things that make me go hmmmm Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 14, 2004 Share Posted May 14, 2004 Elaine, Cost might have something to do with it for others, I don't know, but there isn't anything my husband's insurance company with his employer won't pay for - tests, CT Scans, MRIs, etc. don't even have to be pre-certified, so they had a cash cow with us, and since it's one of the biggest employers in Indianapolis, if not THE biggest, I'm sure they knew it, but they sure didn't jump on it and send him off to the operating table. We have an outstanding health care team and we can tell they really care and are realing fighting for us. Of course, my husband makes them laugh with his "crude" humor and I almost always have big watery eyes about to gush into a waterfall at any minute, so I think they just feel sorry for us because they think we need help period - LOLOLOLOL!!!! I hope you get the answers you are searching for Elaine. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 14, 2004 Share Posted May 14, 2004 Hey Elaine, Check out Ven's post under General Forum. I think the subject was called something about checking out a website. He has a link to an oncologist who will actually write back to you. Maybe you can get a more solid answer there. Good luck! Peggy Quote Link to comment Share on other sites More sharing options...
john Posted May 14, 2004 Share Posted May 14, 2004 There are limited situations where surgery can be done for stage IV. A solitary brain met and solitary adrenal met are two cases. I am not sure if there are others. A patient with lung tumors in both lungs (stage IV), might be treated with RFA. There are also other considerations such as lung function. If a person has other lung problems they may not be a candidate for surgery. As far as the lymph nodes it depends which ones. A person with a positive hilar lymph node is only stage II, versus mediastinal lymph node (stage IIIa) and supraclavicular lymph node (stage IIIb) Stage IIIa is kind of controversial. Some Drs vote for surgery other don't cloesmon had a good point. That is what happened to my mom. Pet scan was negative for lymph nodes, but during surgery they found a few positive lymph nodes. The surgeon chose to remove a lobe vs Andreas surgeon. I don't think anyone knows the best treatment for IIIa yet - but I think neoadjuvant chemo/radiation then surgery leads to the better outcomes Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 14, 2004 Author Share Posted May 14, 2004 Thanks all, John, I guess I want to know then why a brain met, for example is less "troublesome" than a node in the medisteum (sp). I don't doubt your knowledge,but just wonder why that would be. I imagine "they" have done some trial or another and I do know there is some controversy over surgery for both IIIA and IIIB--and that there are many variables, one being the opinion of the individual surgeon/tumor board etc. I do know that my HMO is all about doing what is by a "standard" set of guidelines, and if any request seems to fall outside of a "texbook like list", they put up a fight. However, they do pay for some aspects of clinical trials, so that is a good thing. Elaine Quote Link to comment Share on other sites More sharing options...
john Posted May 14, 2004 Share Posted May 14, 2004 That is a really good point about the brain met. This is what I found. I am guessing surgery would be done in very few instances where the lymph node is not involved (at least the "upper ones" - mediastinum, supraclavicular, scalene) http://www.oncolink.org/resources/artic ... &year=2001 CONCLUSION In the absence of any randomized, comparative study, combined surgery on brain metastases and the primary lung tumor seems to prolong survival time. In our series, factors such as the size of the lung tumor and lymph node status affected prognosis to a certain extent. Adenocarcinoma is a favorable prognostic factor in our study, as opposed to other published series. It seems legitimate to proceed with lung resection after complete resection of a single brain metastasis, at least in patients with a small lung tumor and no abnormal mediastinal lymph nodes seen on the CT scan or during mediastinoscopy. Brain radiotherapy is usually advisable to reduce the risk of local recurrences. The value and timing of chemotherapy remain to be defined (neoadjuvant, intercurrent, or adjuvant after the resection of both sites). Quote Link to comment Share on other sites More sharing options...
john Posted May 14, 2004 Share Posted May 14, 2004 Elaine, There is a section on isolated brain mets and isolated adrenal mets I guess this answers you very good question. There shouldnt be any node involvement for resection http://www.guideline.gov/summary/summary.aspx? view_id=1&doc_id=3650 There is also the idea of "debulking" a tumor. Sometime I heard this is done even with higher stages John Quote Link to comment Share on other sites More sharing options...
john Posted May 14, 2004 Share Posted May 14, 2004 Elaine, There is a section on isolated brain mets and isolated adrenal mets I guess this answers you very good question. There shouldnt be any node involvement for resection http://www.guideline.gov/summary/summary.aspx? view_id=1&doc_id=3650 There is also the idea of "debulking" a tumor. Sometime I heard this is done even with higher stages Radiofrequency Ablation for the reduction of tumor burden (cytoreduction) In some cases RFA can be used to ablate all of the visible tumors. In more advanced cases RFA can be used to debulk the tumor. Tumor reduction (debulking) results in a decrease in overall tumor burden. A 70%-95% reduction in tumor burden can be achieved in most tumors. Tumor reduction seems to improve the person’s response to other therapy. A reduction in tumor burden may also lengthen and improve quality of life. This is a debulking RFA of two large lung tumors. One tumor is 13 cm and is in the right lung. The other tumor is 10 cm and in the left lung. These ablations were performed on separate days. John Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 14, 2004 Author Share Posted May 14, 2004 Thanks John. This is all helpful information. Probably not as sinister as I was making it out to be yesterday. I doubt they know exactly why either, but at leaast they have done trials on it. I always want an answer and then I realized if there were answers, then there most likely would be a cure. The body works in so many unknown ways. Elaine Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted May 14, 2004 Share Posted May 14, 2004 Hi Elaine, I had the right lower lobe removed three months ago. The mediascopy the week before didn't show any spread to the mediastum but the chest did light up on the presurgical pet scan. I had ultrasounds and cat scans to see if cancer had gone to liver or bones. Then during the big surgery they did find cancer in one cluster of lymph nodes in the mediastum. The surgeon didn't seem to want to look me in the eye during the post op exam. I am so mixed up now I don't know whether i"m living or dying. My Gp said the cancer was contained, then two days later the pathology report said they'd found cancer where I told you in the lymph nodes in the chest. So go figure! They say now I am stage 3A nsclc. Does this confuse you more? Sharon Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted May 15, 2004 Share Posted May 15, 2004 Elaine, My surgeon did a mediastinoscopy and closed me back up, because cancer was found in my mediastinal nodes lymph nodes. Most doctors will not perform surgery if the risk of death is higher from surgery than the increase of survival from having the surgery. Mine found a study showing a significant increase of survival from surgery with stage 3A. He conferred with all of my doctors, and e-mailed them a copy of the study. He told me he would be aggressive and do the surgery, only if I could shrink the tumor and nodes from treatment. Also, only within 1 month after treatment. All went well as hoped. He also told me that no surgery if there were mets outside of the chest due to no benefit of increase in survival rates. There are some unethical doctors out there willing to do surgery, but research the risks and benefits yourself first! Also, some people have had surgery if they rid theselves of the cancer, or if their life is jepordized such as a collapsed lung or blocked airway from the tumor. Cheryl Quote Link to comment Share on other sites More sharing options...
Nushka Posted May 15, 2004 Share Posted May 15, 2004 Elaine, My case was just like Snowflake's, except I did have a PET scan prior to surgery and it showed mets to the mediastinum..but the surgeon told us he thought it was a false positive. He said if he got in there and the nodes were positive he would close and redo the surgery after chemo. Well the frozen section (the test the pathologist runs quickly while the patient in on the table) said it was negative...so he took the upper lobe and all of the nodes on my left side. A total of 17 nodes were removed. Of the 17, two were positive. One close to the lung and one in the mediastinum. I went from IA to IIIB right then. I, like Snowflake, was heart broken. But we pick up the pieces and do what we can with what we have left. From there I went to chemo and radiation. I feel lucky that he didn't know about the nodes until AFTER he had finished the surgery. It may be false luck but I feel better knowing they got all that they could find out of me...and then treated the floating cells. I hope this helps a little. Nina Quote Link to comment Share on other sites More sharing options...
J.C. Posted May 15, 2004 Share Posted May 15, 2004 Elaine, My husband did not have a chance to be operated, as the cancer was badly place, all around the aorta, so all the tests PETS, SCANS, X-Rays, showed the same, he had no mets just 1 node involved and all he got was chemo and radiation and medication. (IIIA) it shrank but came back later. No Insurance problem at all, so it was not the cost, just where the cancer was situated. Not much help but that is all I got from searching all his hospital file and talking to all his doctors. Iressa was not appoved yet in Canada and impossible to get. Our private Insurance was paying for all treatments anywhere in the world, his file and report were sent to many places and the results were always the same, inoperable. I am still asking questions and getting more confused. Bye J.C. Quote Link to comment Share on other sites More sharing options...
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