Tom K Posted January 16, 2006 Share Posted January 16, 2006 This is my first post but I was delighted to find a forum with others that have faced this disease. I have a couple of newbie questions at the bottom of this post, but it would help if you understood my situation. I am a 49 yr old male in excellent health with a 35 year history of smoking and a family history of lung cancer (father). I noticed blood in my sputum on 12/2/05 (the day I quit smoking). I went to my Family Physician the same day and he ordered a CT scan because I had multiple risk factors for lung cancer. On 12/8/05, I was told the CT scan revealed a mass in my lung. In less than a week I underwent a bronchospcopy, a PET scan, several more CT scans, X-rays and blood tests. The results of those tests indicated it was adenocarcinoma and the tumor was 2.7cm in size localized in my upper right lung. There was no indication of lymph node involvement or distant metastasis. My family physician, a surgeon and a pulmonologist all recommended we proceed to surgery quickly. A thoracotomey (upper right lobe) was performed on 12/16/05 with no complications. According to the surgeon, the pathology report after surgery indicated the tumor was actually 3.4cm in size but the margins were "very, very good". He also told me 3 lymph nodes were extracted and all were clear of cancer. My Surgeon, Pulmonologist and 2 Family physicians have indicated the pathology report was so good that I do not need to see an oncologist. In fact the Family physician has strongly discouraged me from considering adjuvant chemo. He said the effects are dramatic and can be permanent. He is insistent that other than the size of the tumor all indications are for a low probability of reoccurrence. He thinks chemo would be do me more damage than good However, I have had 3 weeks to do a lot of research and I have seen the studies that indicate increased survival statistics for some NSCLC patients undergoing adjuvant chemo. Since none of my doctors have referred me to an oncologist, I will be contacting one myself for an opinion. I am in the process of collecting copies of all the reports but I do not know how to select an oncologist. I can’t find anybody in my area (Jacksonville FL) that uses that title. My insurance company does not list any oncologists in my area either. Do they go by different titles? Any advice on selecting an oncologist would be appreciated. Second question, is there anybody out there who has had to face the choice of getting adjuvant chemo and what did you decide? If you did go through chemo was it has horrible has I have heard and are their permanent effects. Where can I find more detailed information on the specific effects of chemo-therapy? Thanks for taking the time to read this. It is great to find so many others out here. Quote Link to comment Share on other sites More sharing options...
Debi Posted January 16, 2006 Share Posted January 16, 2006 Hi LuckyGuy and welcome! I think there are all different opinions as far as adjuvent chemo. In the reports that I have read, it can improve your chances by 3-5% if you are 1b or more. The results were sort of sketchy as far as 1a, so I opted not to have it, and have no regrets. I'm not sure what I would have done if my case was different. I don't know of any other names other than Oncologist that an oncologist would go by so I can't help you out there. Maybe someone else can give you some ideas. Whatever you decide about the chemo, and it IS ultimately YOUR decision, I wish you luck and hope you keep posting! Quote Link to comment Share on other sites More sharing options...
Ry Posted January 16, 2006 Share Posted January 16, 2006 Welcome to the site. First, we have a forum called "Ask the Experts" where you can ask questions directly to some wonderful medical professionals. If you search this site you will find lots of information on adjuvant chemo and many varying opinions as to why some chose it and why some did not. I do believe there are studies that have been posted that show chemo following surgery has a higher survival rate. Now...to answer you question on chemo, it's doable. Honest. Chemo drugs have come a long way. There are many members here from Florida that will post about oncologists-- but I seem to remember that there is a branch of M.D. Anderson in Florida somewhere. Great place to seek a second opinion. On a personal note, I've lost some wonderful friends that may have had a chance to be here if they'd have had the option of chemo follwoing surgery. Good luck, and welcome. You truly are a very lucky guy that your cancer was found early. Rochelle Quote Link to comment Share on other sites More sharing options...
Don M Posted January 16, 2006 Share Posted January 16, 2006 Hi: I had a stage IB tumor cut out with an upper left lobectomy in January of 2004. I had no chemo follow up. at the time, the studys indicated that there would be no survival benefit to do chemo followup for stage IB. Then, in February of 2005, a new primary or possbily a recurrent nodule was detected. I had it removed in late February along with the rest of my left lung. It was staged IA. By this time, the studys said that there was a 15% increase in five year survival rate for doing adjuvant chemo in stage IB cancer patients. At this point, I did not care if my cancer was IA or IB. I signed up for chemo immediately. I did 4 cycles of carboplatin and gemzar. I tolerated it very well and have no lasting side effects that I know of except for possibly some short term memory loss. I avoided taxol, because it can cause neuropathy. Your tumor is rather large. My advice to you is to not hesitate about doing chemo. I had a very rare second chance at being cured. I guess that makes me a lucky guy too. Here is a link that I found on line to a clinic in Jacskonville: http://www.google.com/url?sa=U&start=2& ... tml&e=9797 Don M Quote Link to comment Share on other sites More sharing options...
carolhg Posted January 16, 2006 Share Posted January 16, 2006 I had an upper right lobectomy. I was staged 3A.I had chemo and radiation concurrently before surgery. At surgery I had 20 lymph nodes removed. None had cancer and all margins were clear. I had the adjuvant chemo which was two rounds 3 weeks apart. I did lose my hair and was had aches from the third to about the fifth day after each session. The chemo after surgery was much stronger than the chemo I had before surgery. I did not lose my hair or get sick with the pre surgery chemo. Quote Link to comment Share on other sites More sharing options...
MurielK Posted January 16, 2006 Share Posted January 16, 2006 Welcome to our group and sorry that you have reason to be here. I live near Orlando and can tell you that MD Anderson is here (Orlando Regional Medical Center) and the Mayo Clinic is in Jacksonville. I have a friend in St. Paul who spends every March on Amelia Is. and saw an oncologist at Mayo while she was there. In May '03 I was diagnosed w/ NSCLC. I had surgery at the end of June - lost the upper lobe of my right lung. The tumor was 3.1 cm and I was staged at 1B. I thought alot about chemo and finally decided it would be safer to have it. I had 4 treatments of carbo and taxol, one every 3 weeks. Lost my hair and it grew back very, very curly. The chemo was doable. Unpleasant for a week or so, but not so bad that I considered quitting. I'm glad that I did it because a CT scan in Nov '04 (16+ months since the surgery) showed a small tumor in my upper left lobe. Back to surgery and then chemo again (cisplatin-every 4 weeks and gemzar - every 2 wks). We moved to FL 3 wks after the 2nd surgery, so my only experiences here have been with 2 oncologists and 2 pulmonologists. (I didn't like the 1st oncologist or the 1st pulmonologist.) Both here in FL and in VA I saw a surgeon before surgery and 6 wks. post op. That's the last I saw of him - he does surgery and leaves "after care" to other specialists. Then I saw the pulmonologist and oncologist after surgery. Actually, I saw a pulmonologist before both surgeries, also. I'm surprised that your 3 doctors all more or less recomended against chemo. If I were you I'd see an oncologist also. At least listen to what he has to say. I'ts my understanding that as of the 2005 Oncology conference in Orlando last summer, adjuvant chemo is recommended even for 1A's. Look under hematology and oncology for an oncologist. Check the hospitals in your area (on the internet) to find an oncologist (Look under h). Good luck. I'll be anxious to know what you decide. Muriel Quote Link to comment Share on other sites More sharing options...
Kaffie Posted January 16, 2006 Share Posted January 16, 2006 Welcome LuckyGuy, It's my understanding that there is more and more evidence showing the benefit of chemo therapy. I took it, Taxol/Carboplantin cocktail and had a few problems but nothing to cause me to advise against it. My advice would be to put some heavy duty thought into it before deciding not to take it. All it takes is one cell breaking away from the original tumor to start it growing else where in your body. Kathy Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 16, 2006 Share Posted January 16, 2006 Just want to say welcome and I am so glad it was caught early. You are one Lucky Guy. Good luck on your decisions. Hope you stay with us. Rich Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 16, 2006 Share Posted January 16, 2006 they call them oncologists/hematologists here, Lucky Guy. Like Kathy said, it takes just one cell to slip away to start another nest. There has been alot of talk about micrometastases lately. See what you can find out about that. More luck to you. Great Addietude! Welcome. Cindi o'h Quote Link to comment Share on other sites More sharing options...
chloesmom Posted January 16, 2006 Share Posted January 16, 2006 Hi Lucky Guy, Just my two cents and experience with all this. I had pretty much the same story as yours--my tumor showed up as 2.5 cm on the scans and then at surgery it came out at 3.1 cm. and abutted the pleura. Both of those factors made me a Stage 1B. Had about 15 nodes removed and none came back positive. My surgery was in June of 2003, and studies were just being released that were large enough to be considered useful that adjuvant chemo did increase survival rates. My surgeon said at the time that, as a group, they "mildly endorsed" chemo for a case like mine. I had an oncologist for my earlier bout with breast cancer, and she said that the studies were quite convincing and that 5% increased survival rate didn't seem like a lot but it truly was. Since then, my surgeon has told me that more and more studies are showing the benefit of adjuvant chemo for lung cancer. I had already made up my mind that I was going to have it because I know you only get one chance for a cure, so I had cisplatin and gemzar, which was dosed in three treatments, once a week, with a week off. I had nine treatments, in other words, 3 cycles. During the chemo treatment, I continued to work full time and take care of my house. I wasn't really sick, but I did spend my days off mostly resting. I also attended a conference out of state about 3/4 of the way through treatments. It wasn't pleasant, but I still carried on with life. Given the chance to decide how to do this all over again, I would have done the same thing. I have no lasting side effects. Whether to take chemo or not is certainly a personal choice, but please remember this--you only get one chance at first line treatment. Good luck to you. Cindy Quote Link to comment Share on other sites More sharing options...
Eileen Posted January 16, 2006 Share Posted January 16, 2006 Dear Lucky Guy---I had an upper right lobectomy in June 2000-- My tumor was smaller than yours and I was staged at 1A---I did see an oncologist for an opinion about chemo--and he said in my case it was not needed and could even hurt more than it would help-- as others on here have said--the studies seem to help more if you are stage 1B But for your own peace of mind, do get an opinion from an oncologist that has access to all your records and films-- Good luck to you Eileen Quote Link to comment Share on other sites More sharing options...
john Posted January 16, 2006 Share Posted January 16, 2006 LuckyGuy, As you probably have read lung tumors have different "grades" or degrees of aggressiveness. There is the tumor grade, mitotic index, and other indications that may help with your decision. Things like P53 oncogene, kras, and other stainings indicate the aggressiveness. Based on this and the studies about Stage Ib and adjuvant chemo may help your decision. Did the tumor have a well formed blood supply? You might also want to investigate if a clinical trial is right for you http://www.chestjournal.org/cgi/content/full/123/6/1858 Good luck Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted January 16, 2006 Share Posted January 16, 2006 Here is a link to 32 Oncologist in Jacksonville. Hope this helps. http://webapps.ama-assn.org/doctorfinde ... &x=31&y=10 Quote Link to comment Share on other sites More sharing options...
Tom K Posted January 17, 2006 Author Share Posted January 17, 2006 Thank you all so much for the quick responses. Based on the consensus of this group I decided to move quickly. My pulmonologist agreed to see me late this afternoon and I expressed my concerns. He understood and agreed it would not hurt to get another opinion. He has recommended an Oncology group that has lots of experience with LC and he is sending copies of all reports to that group. He also thought it would be a good idea to get a post surgery PET scan which is scheduled for this coming Wednesday. He was extremely upbeat and told me how rewarding it was to have a LC patient that he could actually help achieve a cure. I think he understood my fears and wanted to do whatever he could to alleviate them. I have seen on other forums on this board that the fear of reoccurrence is one of the hardest parts of this disease. I will have to learn how to keep that under control. Thank you all again for responding so quickly and honestly. I’ll let you know which path I take. Quote Link to comment Share on other sites More sharing options...
jang Posted January 17, 2006 Share Posted January 17, 2006 LuckyGuy, My dx was very similar to yours. My doctor told me that for stage 1A there was no evidence that chemo helps. He also said that it would do more harm than good. I was skeptical until I talked to another doctor at a different facility. He said the same thing. Apparently there is evidence that it helps for Stage 1B, but not Stage 1A. This is a hard decision to make. I think about it a lot, and hope that I made the right decision. I try to eat healthy, exercise a lot, and stay positive. LuckyGal Quote Link to comment Share on other sites More sharing options...
blaze100 Posted January 18, 2006 Share Posted January 18, 2006 Hi Luky Guy, I think you should consult with an onc asap. You have a family history, and the surgeon only looked at 3 nodes presumably near the tumor. Has anyone done a mediastinoscopy? The CT/PeT only shows tumors down to about 1cm resolution I think. Lots of good surgeons like to say they "got it all" but that doesn't account for any microsopic metastasis lurking in the mediastinal nodes or liver or brain or ?? It's nothing to fool around with, and chemo is doable. Even though you had clean margins I would talk to an onc and if they advise, I would opt for chemo and radiation. You need every advantage you can take to get on top of this. Barb Quote Link to comment Share on other sites More sharing options...
john Posted January 18, 2006 Share Posted January 18, 2006 I think blaze made a good point. I think doing a full lymph node disection versus a sampling is better. http://ats.ctsnetjournals.org/cgi/content/full/80/1/268 You can search on "lymph node disection" mediastinal The surgeon may or may have not done a full disection. Depending on the how the surgery is done and what side it is on, makes a big differnce on what lymph nodes can actually be reached Quote Link to comment Share on other sites More sharing options...
carolhg Posted February 12, 2006 Share Posted February 12, 2006 I had an upper right lobectomy in July. My tumor was 2.7 when it first showed up on the xray. It was 3.4 by the time I started my treatment. I had 6 weeks of chemo and radiation. My tumor had all but disappeared. I had surgery, followed by two sessions of adjuvant chemo. I was told from the beginning that this was to be my treatment plan and I accepted it because I did not know what else to do. After talking to other people about it, I feel that it was the best thing for me to do. The doctor told me that there could be microscopic cancer cells that do not show up on the scans and that is why they wanted me to have the adjuvant chemo. I know three other people who were staged the same as me (3A). One had chemo before surgery to shrink the tumor but no chemo after. They all have had recurrences. I cannot say that it was because they did not have adjuvant chemo or not, but give yourself the best advantage that you can. Prayers Quote Link to comment Share on other sites More sharing options...
wfshaw Posted February 17, 2006 Share Posted February 17, 2006 Welcome LuckyGuy I consider myself a lucky guy too. I was staged 1a had the surgery in April 2004, no lymph node problems and was told they got it all. I too, struggled with the thought of the chemo but my surgeon, pulmonologist, primary care doc all told me I would not need it. I researched and found, who many consider one of the best oncologists in my area, and he reviewed my case completly and ironically had just returned from a oncologist seminar held in Florida where they review and discuss the latest procedures for cancer patients every year. Experts from all over the world attend this. Armed with his latest findings he told me patients with stage 1A do not need chemo. His comment: Chemo is of no benefit for those staged with 1a lung cancer in the most recent studies. My tumer was 2.5 cm. So I opted not to receive the chemo. So far I am doing well. Go for a CAT in April on my one year anniversary of surgery. Hopefully everything will be ok. I guess what it really come down to is the individual. Good Luck and I will post my CAT Scan results in April. Bill in PA Quote Link to comment Share on other sites More sharing options...
bethluvswill13 Posted February 18, 2006 Share Posted February 18, 2006 Welcome! you came to a wonderful site full of wonderful people with a lot of knowledge. I'll check around on your questions...I'll post if I find something. Quote Link to comment Share on other sites More sharing options...
bethluvswill13 Posted February 18, 2006 Share Posted February 18, 2006 http://www.switchboard.com/Physicians_& ... wpages.htm try this luckyguy...it has some listings in jacksonville,fl. hope this helps. Quote Link to comment Share on other sites More sharing options...
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