Don M Posted December 31, 2003 Share Posted December 31, 2003 I guess I have NSCLC, probably stage IB, although I do not have a diagnosis. What I have is described as a lung mass in my upper left lobe that is 3x5 cm and extends nearly to my left hilum. The doctors have not attempted to stage it. I am just guessing. I have had an inconclusive bronchoscopy, an inconlusive lung needle biopsy, and a PET scan that shows uptake around the periphery of the lung mass suggesting that the center is necrotic. Earlier ct and mri scans showed swollen lymph nodes in my mediastinal area, a pulmonary nodule at the bottom of my left node and 2 3 cm lesions in my liver. The PET scan did not light up the nodes, nodule or liver lesions. The only thing that lights up is the periphery of the mass itself. The pulmonologist and surgeon are recommending an upper left lobectomy that could extend to a pneumectomy. I guess they consider the PET scan to be sufficient data to proceed. I think it is strong evidence too, but there is no conclusive proof that I have cancer. I have always had a very good immune system. I would not get sick with colds or flu, while others did, and have had 2 skin lesions biopsied as benign. They will biopsy the mass after the lobe is removed. I guess I have cancer, but am somewhat apprehensive about having my lobe removed just to find out it was not cancer. Although they did not say so, I think an attempt just to remove the mass itself, since it is so close to my hilum, would not be practical. also, I think they are afraid of seeding the cancer (if it is cancer) to normal tissue. So, I was wondering if anyone has ever heard of undergoing a lobectomy without conclusive proof of cancer? We are proceeding on the basis of the PET scan results only. My surgery is this Friday and everyone thinks I have a good attitude etc., but I just put it out of my mind and do the things I usually do and I have a lot of support. When Friday rolls around, it will be harder to put it out of my mind. I think that it is very strange that this whole business is happening to me. Still, I do believe that we do not live in a random universe, that whatever happens is supposed to happen. I just wish that they could prove it to be cancer before my lobe comes out. Quote Link to comment Share on other sites More sharing options...
Eileen Posted December 31, 2003 Share Posted December 31, 2003 Dear Don I had a lobectomy in June of 2000, however, my needle biopsy was positive for adenocarcinoma Cannot help you with your question, but I can tell you that Pet scans can light up for other reasons----and lymph nodes can also get enlarged for infections that you do not even know you have---I have had both happen after my surgery and a biopsy proved that the nodes were non-cancerous and nodules in my lungs have disappeared I do know someone that had a lobectomy and it was not cancer, just a huge cyst that had to be removed anyway----so I think that sometimes lobectomies may be done for other than cancerous tumors I wish you the very best news on your results and a speedy recovery from the operation----we have many people on here that have had the surgery and they are a great support if you have any questions regards Quote Link to comment Share on other sites More sharing options...
chloesmom Posted December 31, 2003 Share Posted December 31, 2003 Don, I had a surgery without a positive diagnosis. My surgeon explained that after a chest x-ray, ct scan, and a pet scan that all pointed to a malignancy, the only definitive way to get a diagnosis is to get the tissue, and to get the tissue you need to perform the thoracotomy. He did not want to do a needle biopsy because of the risk of false positives, collapsed lungs, and other side effects since the mass needed to come out anyway. I had the bronchoscopy done as the first step in surgery while I was under general anesthetic, and the mass was removed and sent to pathology. When it was determined to be positive, they removed the entire lobe of the lung (upper left). They also removed 15 lymph nodes while they were there for staging purposes. I too was concerned that we were going after what may be a butterfly with a baseball bat--having that kind of serious surgery for something that may not be cancerous, but it was explained to me that after all non-invasive tests are done, and everything is still pointing to one conclusion, the prudent thing is to get in there and get some tissue, so hopefully the mass can be removed early, when it is still in a curative state. And, yes, a pet scan can light up for infection, inflammation, or a tumor, but to miss a malignancy because you are hoping it is an infection or inflammation would be tragic. I know that I was wheeled into surgery still hoping for an infection or inflammation, even though my surgeon told me he was about 80% sure that it was cancerous, and he turned out to be correct. Surgery was tough, but I did recover quickly. I was back to work in about two and a half weeks, did adjuvant chemo without missing a lot of work, and now, almost two months after finishing chemo, I feel great. I hope for the same speedy recovery for you. I wish you luck and I hope this helps. Quote Link to comment Share on other sites More sharing options...
Debi Posted December 31, 2003 Share Posted December 31, 2003 Don, Just wanted to add my 2 cents to the others. I did have my surgery not knowing whether my nodule was cancerous or not. In fact, my surgeon was guessing that it might be Valley Fever, since I had lived in Phoenix and Valley Fever lung nodules are similiar in appearance on a CT and Xray to cancer. He basically told me that it was a 50/50 chance that it might be cancer. It started as a 1 centimeter shadow on an xray last January. CT didn't help, and neither did the PET scan but I was told that due to the size, the PET scan may not register it as malignant. I waited a couple months, there was some growth and my Pulmonary Dr said to me..its in your lung, its growing...lets take it out!! They felt it was still too small to do a needle biopsy and it was in a place where a bronchoscopy wouldn't reach it. From what I have pieced together about the surgery, my surgeon took a wedge and they biopsied it. They came back and said that it was cancer. When the surgeon went to take the upper lobe, my middle lobe wasn't responding well (for some reason it had staples in it already according to the pathology report?) and he decided to take that too and left my lower. Actually, between the tissues of both lobes and 17 lymph nodes, the only thing that tested cancerous was the nodule itself. I am glad that I had the surgery when I did, and actually wish that I could've had it sooner, but the doctors wanted to monitor the growth. I know at this point, a couple days before surgery, I was a nervous wreck. Before that I had managed to not think about it much. It sounds like your doctors have made the right decision and like the people before me have said, we are all here to support you. Any questions you may have, please ask..someone will have the answer!! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 31, 2003 Share Posted December 31, 2003 Don, Good luck on your surgery Friday, and welcome to this group. When you can't distract yourself any longer, pray. Or take a nap. Or pray yourself to sleep. Couldn't count the number of times I did that. Waiting is nerve-wracking. Let us know how you make out. Better to catch it early than late. You are in our prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
Don M Posted January 1, 2004 Author Share Posted January 1, 2004 Thanks you all for your words of encouragement. This is the day before my surgery. I am going to spend the day cleaning my house and packing. It is kind of like getting ready to go on a trip. My wife and I are legally separated but she has been very supportive. I am going to spend the night at her house and I can stay at her house as long as I need after the surgery. One good thing that has come out of this cancer business is that my wife and I have become much better friends ..and are closer to one another now. My surgeon called yesterday and told me that there will be further tissue biopsies while I am on the operating table before my lung comes out. He says that a wegde resection would not work because of the length of the mass and its proximity to the hilum, it would disect the lobe, so they will poke around with a needle until they find some live cancer tissue on the outside of the mass. He also said that if it is cancer, I will likely lose my whole lung because the mass is centrally located and could have spread cancer to the vessels and bronchial tubes beyond the upper lobe and not show it on the PET scan. They will biopsy the area outside my upper lobe too, probably at the bronchial tubes and blood vessels. I am pretty much at peace with the surgery and whatever the outcome will be. I kind of consider it a dry run at dying. Just the acceptance part. Not the actual dying. I am not afraid to die, I just don't want to do it now. Actually, I would not mind living another 400 or 500 years or so. Life is interesting for me. But I will settle for another 20 or 30 years. I am 59 years old now. I am very motivated to do everything I need to do while I am in the hospital and at home to hasten my recovery. I can live with the pain as long as I can return to be nearly normal in terms of my pulmonary capacity. I have very good lung capacity now. I don't feel any shorteness of breath and am used to being aerobic in my work. I quit smoking 19 years ago and smoked for 16 years previous to that. I hope to be able to walk a mile in 15 minutes by the middle of April. That is a test I have to pass to go on wildfire assignments for the Forest Service. I hope to be able to go on fire assignments by the first of July. My fire job is not physically demanding, I do office work around camp most of the time. But the hours are long and the temps can exceed 100 degrees. Sometimes I go out on the fireline to talk to people. My regular Forest Service job sometimes involves walking up steep forested terrain or crawling around the brush. I hope I can do that by July. I will just have to take short breaks maybe. A lot of my regular job is in the office too. I am eligible for retirement this September, but hope to work a few more years. I was planning to retire in 2006 and do fire assignments as a summer job. So, here I go kind of jumping into the unknown. I will let you all know what the outcome of the surgery is (maybe I don't actually have cancer) in a week or so. Bye and thanks again. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 2, 2004 Share Posted January 2, 2004 Prayers and Best wishes tomorrow. God Bless, MO Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 8, 2004 Share Posted January 8, 2004 Best of luck to you, Don. You'll be in our prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
john Posted January 8, 2004 Share Posted January 8, 2004 Hopefully it isnt anything. But if it is cancer it is best to get it removed as soon as possible. From what I have read, taking out more than one lobe or the whole lung results in longer term survival. Your Dr sounds like he is really doing the right thing. David on this board had a whole side of his lung removed and has recently competed in a world championship bike race, so there are people who have survived and even thrived with one lung Take care and good luck Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 9, 2004 Share Posted January 9, 2004 Don- May the best lung win--and the rotten ones come out EARLY! Your attitude sounds great and I'm sure your recovery will keep apace. Let us know the outcome. Prayers being said for you. Quote Link to comment Share on other sites More sharing options...
norme Posted January 9, 2004 Share Posted January 9, 2004 Don, by now you should be home and i hope you are feeling somewhat better. Don't forget to let us know how things are going for you. If we can help count us in... Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 9, 2004 Share Posted January 9, 2004 Don, Just wondering how you are doing. You are in my prayers. Hope your recovery is fast and ell is going well for you. Heres hoping that you and the Mrs can reconcile. We don't know what life will bring to us and maybe this is God's way of opening our eyes and making us realize how much we have... God Bless Karen Quote Link to comment Share on other sites More sharing options...
Don M Posted January 16, 2004 Author Share Posted January 16, 2004 Hi you all: I had a upper left lobectomy on Jan 2. I went home on Wed., Jan 5. The only snag was that I had to carry my catheter with me as I could not void my bladder with the catheter removed. I had to have it put back on at the hospital. I got the catheter removed Friday the 9th at the surgeon's office. I was able to pee by early Sat morning enough to be comfortable. I went to an urologist last Wed and I have a bladder infection which is now being treated. I was told that if I cannot void my bladder by the next visit, I will have to learn how to install my own catheter until the infection clears up. I WILL VOID..I MUST VOID.. I DO VOID. I think I will pass the test at the next visit in 2 weeks. The pathology shows that I am cancer free. The only cancer was in the mass itself. It was NSCLC stage 1b. The surgeon recommends that I do a follow-up with chemo since the cancer was so big. He said he would defer to the oncologist on that decision. I will take the chemo treatment if it is recommended. I have heard that the survival rate is better for stage 1 cancers if a chemo follow up is done. I will need to research chemo now I guess. Are there any long term bad side effects from chemo? It is 2 weeks since I have had my surgery. I am not as sore now, but have an uncomfortable swelling of a gelatinous material from my left breast around my side and on part of my back just above the incision. It also feels like there is a knot between my shoulder blade and the incision where most of the swelling resides. It feels like an obstruction when I move my arm around. Sometimes it feels kind of like a cramp. I hope this swelling soon goes away. Maybe then the knot will disappear. It also feels very tight where the swelling is. I think the swelling in my feet and legs has gone away. I went for a walk around the block two times in a row today. It felt good. Quote Link to comment Share on other sites More sharing options...
bobmc Posted January 17, 2004 Share Posted January 17, 2004 Hey Don, Glad you posted, was worried about you! Sounds like your in the healing stage and cancer free. IT DON'T GET MUCH BETTER THAN THAT!!! The walking an exercise is great, keep it up!! Sorry to hear bout the bladder thing though, that just plain sucks. I agree and would also opt for the chemo, its short term only and gives a degree of comfort that'l help out down the road. Again glad your back with us. God bless and stay well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 17, 2004 Share Posted January 17, 2004 Sounds good to me, Don. Glad to hear you are doing well, and that you are posting again. Cheers. Don Quote Link to comment Share on other sites More sharing options...
Nancy B Posted January 17, 2004 Share Posted January 17, 2004 Hi Don, so glad your surgery went well and you are on the road to recovery. I had an upper left lobectomy in February 2000, Stage 1B (tumor 6cm). I consulted two oncologists and they both said chemo was not necessary as no lymph nodes were involved. Now, I am reading that chemo is really being recommended for Stage 1 and 2. Makes me alittle nervous that I didn't do it but I just have to keep moving forward. I think now I would insist on it. I am doing fine and have even completed two half marathons (one to raise money for cancer support). I just try to stay on top of things, chest xray every 6 mos and ct scan once a year and lots of praying. Sounds like you have really recovered quickly from the surgery - walking is great and you are doing it so soon after surgery....wow! Take care and you and your family are in my prayers. Nancy Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 17, 2004 Share Posted January 17, 2004 Don- So glad you posted to let us know how you are doing...REMARKABLY WELL!! As you suspect, many of your uncomfortable symptoms will dissipate with time. BUT...some of them may never go away. It's still WAAAAAYY better than having the cancer growing in there! The follow-up chemo is still controversial, so do your research and make up your own mind. Personally, I would go for it as just one more safeguard. Even if it only gives a statistical improvement of 5%, that is better than not having that chance. You might want to read the article posted by Cary in the "TREATMENT/RESEARCH" forum (link): http://www.buy2k.net/lungcancersurvivors/forum/phpBB2/viewtopic.php?t=5096 Keep up the walking and peeing!! Quote Link to comment Share on other sites More sharing options...
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