Don M

Hi Debi: I am not sure what kind of mask you tried. I have never tried a mask and so have not had a reaction. Have you tried an Occupational Safety and Health Administration( OSHA) approved respirator? Maybe you could have an air purifier temporarily installed and not even need a mask. Your employer is obligated to provide a safe working environment for you. Look in to the air purifier thing. The link is to an OSHA site. I think the situation you describe at your worksite would be unhealthy for anyone, not just lung canceer surviors. Don M http://www.osha.gov/pls/oshaweb/owadisp ... p_id=12716

Hi Rich: I never had adjuvant chemo. So far, I don’t regret it. I would never discourage anyone to try it. I have had 3 checkups so far, and all is ok. I have been taking supplements in lieu of chemo. They are selenium, vitamin E, vitamin C, green leaf tea and CQ-10. I don’t know if they actually do any good, but I take them anyway and believe that they do. There are several ongoing studies of selenium use for follow up treatment of early stage lung cancer. When I saw my oncologist for the first time, I told him I was leaning towards not doing chemo because the benefits would be marginal and there was a risk in using the chemo. My oncologist agreed that using supplements in my situation instead of chemo was a prudent and reasonable course to follow, so I am doing it. You might talk to your oncologist about supplements. I hope you get the back and joint pain managed effectively. Can you walk a lot? I think what helped me the most was walking. Good luck Rich. Don M

You are a great writer David. Good Guck with your chemo.

Hey Fay benign is a good word. I remember how much I wanted to hear that word about a year ago. I hope your liver problem is resoved without surgery.

Debi: Maybe you could live with the fear if you just let it wash over you and go away. It is kind of like a storm that lasts for a while and then ends. If you could just somehow let yourself be afraid, acknowledge it, and not worry about the fear, you kind of objectify it and it goes away. Anyway, I hope you get through it. You have my best wishes and prayers.

Hey yay!

Kim: please accept my condolences. I will pray for your dad.

Charlotte: I am praying for your husband and you and family.

I am sorry you have to go through this too Cheryl. Battling cancer is hard enough. My first reaction was document every thing and get an attorney. That is what everyone else said when I looked at the posts. I think if your agency receives public funding, even as a contractor, your employer could be in trouble for saying the things he said to you.

Hi Dr Joe; I think you probably made the right decision at the moment in light of your later post describing the family dynamic, where the patient appears to have turned over the management of his medical discussions to the family members. I guess legally you were hanging out there discussing the case with the family members without the patient’s permission, but you needed to address that moment of interaction with the daughters, as humanly as possible, and maybe that was not the right time to discuss legal matters. Anyway, as a patient, I would want to know every thing, including the odds. I pretty much knew everything about my cancer by the time I saw my oncologist. I obtained copies of all the medical reports. During the midst of my cancer odyssey, I was looking at the possibility of inoperable lung cancer with possible lymph node involvement and mets to the liver. But a PET scan ruled out mets to my liver, and so I had surgery. I knew the surgery could be aborted if my lymph nodes were involved, but they turned out ok. So, after surgery, I knew I had stage 1b. When I saw the onc, I told him that I had read that the benefits of adjuvant chemo were marginal. I told him that I was leaning to not do chemo, but asked him for his opinion. He agreed that chemo provided me with marginal benefit, and so it was a mutual decision to not do chemo. I received no pressure at all from the oncologist to do chemo. I believe that I have had a surgical cure. Another reason I did not do chemo, was the surgeon’s remark, “I had a well behaved cancer”. I thought that the onc was a good listener and a caring man. I go to him for my regular checkups now.

I am sorry for your loss Dolly.

Donaf: Please accept my condolences. You must have loved your brother very much. I also lost my brother to lung cancer 4 years ago. I still talk to him.

Hi Matt: I have been out of town too. Welcome.

Yeah.. I hope it's benign. I think they can let you know the same day. My deciding test was a pet scan. All other tests were inconclusive. I passed through Bend on my way back from a fire assgnment last Wed.

Missy: I would have chimed in with every one else here, but was out of town on a work assignment. I am glad you are seeing the doctor tomorrow. I hope you get a cat scan and pray that you get good news.

Hi Pat: I hope you have a very good outcome. I declined to do chemo for my stage 1b, but if I got cancer again, I think I would do the chemo. At least it looks like its not systemic, eh?

I am 7 months out from my operation, had my second checkup with a cat scan and am cancer free. It is a good thing. Now I will go back to normal until November, my next checkup.

Good Luck waiting and wondering person. I had a pneumothorax too, Not fun.

Hi Angie My job requires walking in the woods. About half of it is in the woods and the other half in the office. I was motivated to recover as rapidly and fully as possible so that I could continue to work at my job. I used the sucking thingy a lot. I was in the hospital for 6 days. When I went home, I started walking around the block. After about 2 weeks I could walk around the block 4 times in about 20 minutes, I continued to walk a mile every day for 3 months until I could do a mile in 15 minutes. That was what I had to do to pass the minimum requirements to be get fire assignments. It is called the “light” test. Right now, if I briskly climb a flight of stairs I get a little winded, especially if I try to talk immediately afterwards. I have had no postoperative pain to speak of. There is no pain now. I feel a tightness and pulling sensation along my shoulder blade. I took physical therapy beginning a month after my operation for 3 months. I think it helped a lot. I worked on rebuilding my muscle strength and I had my scar massaged to break up the collagen so that the scar tissue would not get too thick. I tried splitting firewood about 3 months after my surgery, but that just messed me up a bit. I had to have friends split it for me. So, I continued the physical therapy and was able to split wood after 5 months. I am 59 years old. I think the walking, and physical therapy helped a lot. Plus, I had a good surgeon. I go for a ct scan next Tuesday to see what’s up. I expect my onc to tell me I am still cancer free. I hope your dad has a speedy recovery.

Debi: I have not been here in months. Ayway, be of good heart. It is just the nerve thing I bet. Still, chase it down with tests as you have been doing. I had an upper left lobectomy last January and have had one checkup. My next one is due in a few weeks. Recently I thought I had noticed a decline in my aerobic capacity and fretted it a bit. I figure worrying a bit is to be expected. I have not noticed any nerve pain, but I guess it is a bit too early if 8 months is the threshhold.

Hi: I had a upper left lobectomy Jan 2. It was a full thoracotomy because of the size of the mass and its nearness to the hilum. The pain was managed well with an epidural. If you have a slightly enlarged prostate, it may be best to leave the catheter on until you are over the effects of the epidural which can affect the prostate. I had the catheter removed while the epidural was still attached and could not void my bladder. The next day they put the catheter back on and I was discharged the following day with it still attached. It came off a few days later, but I got a bladder infection which I am taking medication for now. I was in the hospital for 6 days. The catheter experience was more unsettling for me than the actual cancer and operation. I am still recovering and at this point I can pee just fine, I still have some swelling, I sometimes get cramps in my muscles along the incision site. There is not much pain now other than the cramps and occasional back aches. Hopefully the cramps and back aches will diminish over time. I go for walks and get a little aerobic which feels good. I was pretty conscientious about doing the breathing exercises. I expect to go back to work around the end of January. I guess I was scared at some moments, but mostly I was so surprised that it happened to me. It was all kind of dreamlike. I joked with the surgeon just before surgery. I asked him if he was dyslexic. He laughed a no. Then he drew a happy face over my left lung. Bring slippers and a bathrobe. I also brought a sponge bob (cartoon character) puppet thing that would spout out sponge bob one liners whenever I tapped it. I was playing along with it on the day after my surgery and the nurses came running to see what the noise was. They laughed when they saw it was just me playing with sponge bob. One of his statements is, “ Don’t worry, I’ll be alright”.

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.

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.

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.

Thanks Cary and Donna for your info on VATS. After talking to the surgeon, I have decided to go with conventional thoracotomy. Not only does my lesion have to come out, but there are other bodies that need to be checked and removed to see if they are malignant, i.e., several swollen lymph nodes and a pleural based nodule at the bottom of my left lung. The lesion is 3x6cm contained in the upper left lobe. It has just barely enough margin. I may lose the whole lung if the tumor has spead along a blood vessel to the lower lung. And, when the chest is open the surgeon can look and feel for anything the scans may have missed. My main goal is to get rid of the cancer and not balance that with quick recovery. Here's hoping the lymph nodes are cancer free. Everything except the lesion checks out cancer free on my PET scan, but the scan is just 80% accurate. I had a bronchoscopy and a lung needle biopsy, but they were inconclusive presumably because the center is necrotic. The PET scan shows a ring lighting up around the mass. I have two 3 cm lesions in my liver that was ct scanned and was a concern for being metastatic, but the PET scan says that they are benign. So, I may squeak by. They still don't know what kind of cancer it is, they will have to biopsy it after surgery. I guess there is a remote possibility that the ring of light around the mass is not from cancer, but I am not going to take the chance. Yup, out it comes. I do have a history of benign skin lesions, but that did not impress the docs too much. I asked them if I get a consolation prize if it turns out not to be cancerous. Ha Ha. I told the surgeon I want my rib back. He said, sure as long as I remind him on surgery day. Maybe I can make a flute out of it. My surgery is schduled for Jan 2 at Capitol Medical Center in Olympia, Wa.