chloesmom Posted August 14, 2003 Share Posted August 14, 2003 Am interested in knowing from early stagers (with recent diagnosis and surgery) whether or not they are getting chemo treatments based on that study that just came out during the asco meeting in June of this year? I am--not really a hard decision--I want to do all that I can to avoid a report someday of "it's back." Just had treatment one today--cisplatin/gemzar. So far, so good. Would love to hear from all of you, what you decided, and why? Quote Link to comment Share on other sites More sharing options...
MurielK Posted August 15, 2003 Share Posted August 15, 2003 I don't have all the info. I need to make a decision re: chemo and will see the Onc. again after I have a CT scan next week, but I think that if you are going to make a decision based on the study that included 1867 subjects at 148 centers in 33 countries, that you need to examine the research report, not just summaries or abstracts of it. And, you should discuss the article with your oncologist. I have a strong background in statistics and I don't find the summaries of that report convincing. The diffs. in outcomes at five years for stage 1 & 2 subjects are statistically significant, but small. Hopefully when I read the article, I'll be more convinced one way or the other. Muriel Quote Link to comment Share on other sites More sharing options...
Nancy B Posted August 15, 2003 Share Posted August 15, 2003 Is it possible to get a copy of the article that you are talking about? - I would really like to get more information on this. Where would I look for this? Thanks for your help. Nancy B Quote Link to comment Share on other sites More sharing options...
Debi Posted August 15, 2003 Share Posted August 15, 2003 I've posted just recently regarding this issue because I couldn't decide what to do myself. I, like Muriel, was not completely sold on the statistics in the report and the fact that it was one study of 1800 plus people. I also have questions regarding why Oncologists have "jumped" all over this issue but Surgeons and Pulmonary Specialists seem to be holding back. As I've posted before, I'm a cynic...and wonder how much of this big drive for adjuntive therapy is for the additional money that it will provide to the Oncologist's pockets. My Surgeon and Pulmonary Specialist had told me that I did not need any follow up chemo...the Oncologist that I chose, tells me that I need treatment every 3 weeks for 6 months after employing what could be construed as scare tactics. When I had questioned my surgeon about this report, he had kind of waved it off...saying that it was too new, the study group too small and the projected survival increase for Stage 1 too small to outweigh the risks of chemotherapy. He had said that it would be better to heal and to build my strength and immune system up so that in the future, if something did show up, I would be strong enough and healthy enough to fight it. He also mentioned something about the body building resistance to chemo. Basically, his and the Pulmonary Specialist's opinion was..its gone..I have over an 80% chance of making it...get on with my life, follow up every 3 months and that's the end of it. They both told me to start living again. My additional concerns are that I am a manager in a Call Center that during the next few months will ramp up to 450 people in one huge building. Traditionally, this is a hotbed of germs..flu, bronchitis, what have you and being a manager, I can hardly afford to avoid people. If I have the chemo and compromise my immune system, what are my chances of getting sick and perhaps becoming a fatality that way? Not meaning to sound dramatic...but I'm sure its happened...I just can't seem to find any statistics. And why put myself in that position for something that I feel isn't a sure thing anyway? Hell, if something came out that said..here take this chemo and you will be cured and never have cancer again..guaranteed....I would quit my job if I had to. But this study is not giving me anything like that. It is a huge IF as far as I'm concerned. And speaking of ifs..if my surgeon and Pulmonary Specialist HAD recommended follow up chemo also, I most certainly would have gone for it since those are the people I trust the most. I trusted my surgeon enough to cut me open with whatever they use to cut you open , I don't think you can trust a man any more than that. Why should I change now? I guess ultimately, my decision has been made and that is, at this point anyway, I will not be taking chemo. There just isn't enough proof for me that this would increase my survival rate significantly enough to put my body through this while I'm still recovering from surgery. If, at any point in the future, something does show up on an xray...of course, I will immense myself in whatever is suggested. But, for me, one study does not warrant taking something that is for treating cancer and turning it into a preventive measure that may, or may not, work. I know that public opinion seems to be toward getting the chemo. That is great...and no matter what decision anyone makes...it is their decision to make and will be the right one for them. What I have written is only my opinion and one that I know is mine...I have no clue if it is right or wrong, I just know that it is mine and the one I am going with. We all need to make our minds up with whatever knowledge we have and like I've posted before, the important thing is to decide what to do and not look back. No regrets. I may end up with a recurrence 8 months from now and want to second guess my decision...however, I may still end up with a recurrence if I take the chemo. Who knows about this damn disease?? Anyway, sorry for the long winded response but those who know me expect nothing less!! Debi 46 years old Stage 1A NSCLC Surgery June 16, 2003, Mid & upper lobe removed Quote Link to comment Share on other sites More sharing options...
Snowflake Posted August 15, 2003 Share Posted August 15, 2003 Geez, Debi, between your replies and mine, it's hard to believe either one of us recovered from a major surgery and were SHORT OF BREATH! ...as for what the surgeon uses to cut us open, I'm pretty sure it's a platinum-blade 350cc CHAINSAW! My oncologist does not recommend chemo for me, just clinical trials. A trip to MD Anderson sent me home with: "Nothing we can do, chemo and radiation aren't proven to work"... The oncologist was okay on radiation for fugitive cells when I returned from TX, and the radiation oncologist agreed. ("Fugitive cells" - I'm seeing a shoot out like the one at the OK Corral!) As for changing opinion, my care is ongoing. I'm sure differing input (change in numbers or signs of cancer) will bring about a different assault by my medical "team". We'll cross that bridge when we come to it... I guess part of the secret of "dealing" with the disease is to be secure in your decisions. When in doubt, do some digging...ask the hard questions, and be prepared for the answers to be not what you want to hear. ...and after all that, let the inner kid out, the little dirty faced one, arms crossed at the chest, pout on the face and "So what, I'll do it MY way" on the lips. (Of course, that might just work for headstrong, stubborn, tenacious, bull doggish, or determined people - should include just about everyone here!) Yet another chapter in something resembling a Michner "short story"! Rambling again... Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
rinksgal Posted August 17, 2003 Share Posted August 17, 2003 Yes my s/o was also told no further treatment needed. They said they got it all by removing his right upper lobe and that he was a very lucky man!! We got two opinions from two different oncologist. The second one told us of the new study, but said he didn't think Darrell needed to go through all of that at this time. They had removed 9 lymphnodes and all were clean. He had his surgery May 20,03. and within 5 weeks his fever returned(for some reason he always runs fever with his lc) and no one would listen to us, except his family doctor, who ordered a pet scan. Which showed magligancy in his mediastinum area.. Darrell questions hisself about his decision not to pursue other treatment.. But like I told him, they would of had him recover from his surgery before they would have started anyways. But He says if he had it to over he would definelty demand chemo... This is a horrible disease and none of us know what will happen next....I wish all of you the best of luck, and I'm not trying to worry any of you. But we were told the same thing. and here it is august now and hes been doing radiation and chemo, with more to come.. No Treatment Needed!! WHAT A JOKE!! Now a little over 2 months later he has mets to his liver, lymphnodes in the mediastinum area and a small pleural effusion. Good Luck Quote Link to comment Share on other sites More sharing options...
MurielK Posted August 17, 2003 Share Posted August 17, 2003 A summary of the article I was talking about and of a study in Japan that showed, for T1 tumors, 89% survival rates with and without adjuvant therapy can be found here: http://www.medscape.com/viewarticle/457539 Muriel Quote Link to comment Share on other sites More sharing options...
Eileen Posted August 18, 2003 Share Posted August 18, 2003 Hi ---I was stage 1A and was told by a surgeon and an oncologist not to get chemo--- I think the study was on 1B stage? I cannot open the previous file as I do not want to give my name and e-mail to them so cannot open the article I am very comfortable with my decision---and honestly, isn't chemo to shrink existing cancers? If it killed cancer cells, why would it come back after people have had chemo? I will try and do some research into that Regards Eileen nscl stage 1A lobectomy 6/00 Quote Link to comment Share on other sites More sharing options...
john Posted August 18, 2003 Share Posted August 18, 2003 Hi, The one thing I have read is that carboplatin is supposed to be just as good as cisplatin with less side effects. It might be something to ask the doctor. Cancer cells sometimes come back because they become resistant. I have read lung cancer is difficult to treat because it is a mutation of lung cells and lung cells have a lot of built in mechanisms to defend themselves. So the tumor lung cells have great defenses and "learn" how to put up defenses against the chemo John Quote Link to comment Share on other sites More sharing options...
john Posted August 18, 2003 Share Posted August 18, 2003 Another thing to note: If the a right lobe is removed it is easier to get more of the lymph nodes than the left lobes. So this may be another consideration when thinking about adjunctive chemo. There are some studies on induction chemo (chemo BEFORE surgery) for early stage cancers. Neoadjuctive (induction) chemo is supposed to be the best for locally advanced stage IIIa/IIIb. Again the cell type matters - certain tumors do not respond well to chemo. Praying for everyone Quote Link to comment Share on other sites More sharing options...
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