Tami

I'm glad someone else has posted this. Not glad you're having pain but glad that I'm not the only one. My surgery was a couple of years ago and on last years follow-up x-ray it shows a displaced rib. I have lots of pain on and off. The pain in itself is hard to live with but the fear that it brings is really tough too. I don't take any meds for pain... I try to live with it and the pain comes and goes. I just wish the doctors etc. could really tell you why this happens and also I wish they would tell you (inform you) or these realities before you have surgery. I'm not saying I wouldn't have had surgery but at least I'd have known what I was getting into. I was recently at an othopedic sugeons a couple of weeks ago for a carpal tunnel thing. And while there I told him about how my chest hurts so much at times. i told him about my 3 surgeries and he said they should have never done that to you 3 times. Your chest will never be the same now. I mean I'm glad I'm alive and everything I just wish they would tell you this stuff. I lost my left lung, parts of my ribs, too many lymph nodes to count and even my heart sac (which mine is now made of nylon ). I think I have some lymphedema but my HMO won't cover treatment because I didn't have the right kind of cancer, our small town has no pain clinic so the options are limited. I still do things like push mow the yard (it hurts!), the laundry, all the cleaning, run the kids here and there, and I just picked up a 2nd job which has increased my working hours to over 60 per week. I'm glad I'm here and I can do this but it's tough. I guess like the rest of you it's something that we all learn to live with but it reassures me to know that I'm not alone.

Kim-I also went through it with my chemo/radiation. For one week all I ate were popcicles everthing else hurt too much. I would let your mom eat whatever she can and if it's smoothies then bring on the smoothies! (you can make them with Ensure or Boost to add some vitamins). Try differnt things. I liked things cold but some liked room temp better. I'd just keep trying. One thing to remember... I thought I'd ALWAYS hate food and I'd never feel like eating again but after a time the docs narrowed the radiation field and it moved off my neck bit by bit. It is AMAZING how quickly your body will try to heal itself and it didn't take really long before it was almost tolerable, then tolerable etc. It only lasts for a time and then it will s-l-o-w-l-y get better. One thing though because of the radiation my esophogus has narrowed and curved a little. I saw it on my barium swallows and now over a year from treatment I still need to take small bits and chew them well. Things will stick in there a little.

with so many stories I just wanted to share a couple of mine. My treatment was screwed up from the very beginning. Some due to my HMO, some just the doctors. I've had doctors tell me reassuring things and others tell me "not to waste their time, I was terminal." But I have two experinces that will always stand out. I had a thoracotomy for tumor evalaution (biopsy, etc.) and was immediately started on chemo. After my chemo rounds were completed I was sent out to Geisinger Hospital (a large hospital in PA about 2 hrs from my house) for an additional thoracotomy to try and remove my tumor. The surgeon told me that he didn't know for sure if he could remove it or not. I asked him if I could see another surgeon that might be more specialized. Well his office moved heaven and earth or so they made it seem in order for me to be granted an audience with this surgeon. This man must have been the busiest man on earth because my visit should have been a candid camera episode. First of all I was alone (never had anyone to go with me to chemo, radiation, appt or surgery-Lucie you are one lucky gal!) so I was at their mercy. The nurse showed me into the room and told me to undress and put on the old paper gown, and wait.... I waited 1 hour. Finally he comes in introduces himself and gets paged. The emergency room... runs out to make a phone call comes back about 45 minutes later. Talks to me again, one of the nurses runs in and tells him she needs him... so I wait. But the best part is when you wait in those rooms at hospitals long enough... the lights go out. Some sort of timer I guess. So every 30 minutes or so the lights would go out and I would be fumbling around in the dark in a paper sheet trying to find the sensor to get the lights back on (no switches, that would be too easy!) he ran in and out of the room 3 times before I talked to him for all of 20 minutes (he wasn't very nice and wouldn't operate on me) but my "visit" last over 4hrs!! 4 Hrs waiting in a little room-half the time in the dark. I could never find any nurses in the hall and there was no way I was walking too far in a paper top. Incredible! BUT... the best care I had came from the wonderful sweet man (Jim)who gave me my chemo infusions. After I was told my tumor was inoperable they sent me back for chemo in cojunction with my rads. This caring man helped me through my 6 round chemo the first time talking with me while I cried etc. and now I was back and my prognosis was worse. My chemo infusion time was going to be 8 hours! The oncologist wanted me to get a port and go to the hospital each week for chemo. But I just couldn't do it for some reason it just seemed as though checking myself into the hospital would seem to be too much like I was really sick seems stupid huh?? Anyway I talked with Jim (the tech) and told him how scared I was and he told me that he would do it for me in the office! so this wonderful man would come in once a week on his off day open the office for me to begin my chemo at 7:00 am. he then sat and watched TV with me all day, even shared lunch with me (he brought lunch for us because he knew I wouldn't eat otherwise) and then followed me home to make sure I was okay. he worked with my veins so I didn't need a port and actually made me feel like I was worth something. He was in his 50's with a wife who was ill off and on.. God just seemed to fill this man with compassion. I've been back to see him several times and he is still a sweetheart. When I was the most scared and the most concerned-i was sent an angel. Sometimes the worst care, sometimes the best care. I just keep hoping that when I'm getting the worst someone out their appreciates that they are getting THE BEST!

I think this is pretty typical. I've spoken with several people who have had surgery and found that they were pretty "clueless" about what they would do and what types of pain, decreased activity etc. that they may have after surgery. I had two thoracotamys (sp?) and I was never told any details about breaking the ribs, the wires to hold them in place etc. Then when I had my pneumonectomy I knew to ask a few extra questions (some of the difference was in the hospital I went to as well) but I didn't realize that they would need to remove part of my rib, that they would need to rebreak my ribs again, also dislocate my shoulder! along with all the unique things that come with the loss of the left lung like the heart shifting, the internal organs moving up and just the lingering pain. I know they don't want to scare you before surgery but after it's over they really should say "this is what we did, this is the position you were in during surgery so your back may hurt now etc". I've found out so much information now just out of coincidence that I really wish I would have known about in advance.

sorry to bother everyone again... my pneumonectomy was 2 yrs ago with radiation to the chest (12 weeks) a few months prior. I'm kind of curious about my expereince and wonder if anyone else had this happen to them. I'm not sure why this concerns me 2 yrs later but... When the doctor did my surgery he told me that the radiation had completely destroyed my lung and chest area. In fact the tumor which was on a lymph node outside my lung had been hit with so much radiation that the whole area in my chest was like concrete with scar tissue. When they removed my tumor they ended up removing part of the paracartium (sp?) the sac that hold the heart along with my lung because everything was "cemented" together. Has anyone else had this happen? anyone have a lot of radiation and then surgery? I know that radiation is the gift that keeps on giving and I wonder how much damage it really does. I know my doctors never talked to me about these possibilities before treatment. When I had the radiation I really didn't have other options but it would be nice to know if this is causing and will always cause chest pain. Anyone else have a similar experience?

I know we've been down this road before and I'm sorry to bring this up again. I've read all the previous posts but for those of you with mets I'd appreciate your input. My pneumonectomy was 2 yrs ago, and before that were two additional chest surgeries, plus 2 six week rounds of chemo and 12 wks of Rads. I don't go to the doctor for follow-up... I know I should etc. but I can't. Mentally, physically whatever I can't do it. I will go for a regular physical, mamograms, if I have a cold etc. But when they mention my cancer I totally clam up and say everything is fine and I don't want to talk about it. When I had my pneumonectomy 2 yrs ago my tumor was a little different then most (they screwed up my diagnosis.. HMO's stink!) and they told me I was fine now. No additional treatment, don't need to see my oncologist again, just have a chest x-ray once a year. Well I had one last year and it showed 2 broken ribs (one displaced) one was from the surgery where they had removed a large portion of my rib for testing. The other (the displaced rib) they thought was one of the ones they broke to remove the lung and somehow I jarred it out of place. After that x-ray I haven't done a thing since. Which brings me to where I am today. I believe I have some lymphedema as well as chest/breast edema. I have swelling in my arm and chest-I also have some pain. What I'm trying to do (to be honest) is distingush the difference in my own mind about the pain from edema from the pain of a met. I know from reading past posts that some mets never hurt and they were found by accident. (I remember Don talking about Lucie's) but for those of you who have painful mets how do they feel? Does it come and go? Does heat/ice help? Is it a down deep pain or a surface pain? Does it hurt more when you use it? I still do everything I did before-I've moved furniture, mow grass with the ancient push mower etc. and it never really hurts--not a bone pain. It just feels swollen and sore. I know I should go have it checked but I also know that I won't--at least not right now. So I'd appreciate anyones input on how mets feel. Thanks--

David, Prayers to you for a clean Bronch. I agree with all the rest that they wouldn't want to give you that nasty chemo if you still have any lingering infections. Ah yes, those glorious nights... the time when your mind wonders and decides to replay every possible scary, horrible thought it can come up with. I hate the nights. Everything always seems better in the light of day. Here's hoping you'll be back squealing those tires real soon.

Shelly, Maybe I've missed this although I've been looking through all the posts. How did your tests turn out? Have you heard anything?? I've been thinking about you so much and praying for you.

You've had many responses maybe too many to read but I hope you see this! I was a stage 4 LC patient. I had an HMO and I was told to make my final arrangements. I had two (yes two) huge open chest surgeries for my tumor. The first one for diagnosis and removal of tumor (couldn't get it) then a second one after chemo treatment etc. (by a team) to finally remove my tumor. When I came out of surgery the 2nd time I was told that no matter what they did they couldn't remove it. It was attached to the aeorta, underneath my heart and I was inoperable. I should have more chemo/radiation and pretty much wrap up my life. I was 36-37?? with 3 very small kids, divorced and alone. BUT my primary care doctor listened to me when no one else would. I begged for more opinions, she wrote letters to my HMO, I called them many, many times begging for an out-of-plan visit to another hospital. Every time they denied me. So I had more chemo and radiation. But I kept begging for another surgeon to examine me. FINALLY, they relented and I went to Fox Chase Cancer Center. The allowed me ONE visit. He looked at my x-rays, pet scan and ct scans. Then he said "I can take this out...." I'll never forget that as long as I live. "I can remove that tumor..." I told him that I was told I was "inoperable" by two surgeons and the "tumor board" He just said "maybe they can't do it but I sure can!" Needless to say he did remove it--over two years ago! Please don't stop fighting. Maybe your group can't remove the tumor but maybe someone else can.... Fight with those HMO's-do what you need to for survival. I was a stage 4 inoperable LC patient with no hope-I've been where you are and it stinks. But believe me there is always hope. Regroup your thoughts, renew your strength and get going.

It will get better... I had the same thing just after surgery but I had my chemo one a week for about 7 weeks along with the radiation everyday for 12 weeks. I took the zofran for the horrible sick stomach feeling, but too much of it made me very confused and that I hated!! So I only took it as needed. Drink lots and lots of water!! It's hard on your kidneys and the water will really help flush things out. Just hang in there because you will be going up and down quite a bit. I went through different chemo regamines and they each seem to have their own little side effects. numbness/tingling, I also had problems with my hearing, but it would get better, than worse, than better, than worse. Like waves that you just have to ride out. Towards the end I thought I couldn't handle it another second... so tired. But then they would tell me that they were going to narrow the radiation beam or that I only had one more chemo etc. It helps to keep you going. the most amazing thing to me was how quickly your body bounces back... you're young (I was almost your age when this thing began) and I started feeling better almost immediately after my treatment was over. It was amazing, I'd almost forgotten what it was like to feel good again. I kept a calendar on my fridge and crossed off each day - with a little note about how I felt. Pretty soon I could see the pattern and I knew that I would ride it out. Take one day at a time through the treatment and if that gets too hard go minute by minute. You can do it!!!

Ginny- my thoughts and prayers are with you both. I was a patient at Fox Chase they did my pneumonectomy 2 yrs ago. They were wonderful to me and I'm sure they will do everything they can for both of you. Keep your head up and I'll be praying for a miracle for you....

What do you do for it? Wraps? massage? I keep trying to ignore it but my arm aches and so does my chest. Why do doctors not recognize this in LC patients? I had so many lymph nodes removed during my surgeries and before they could decide what was wrong with me they took out a bunch of nodes throughout my chest, clavical and arm pit just browsing around looking for stuff. Then I had 12 weeks of radiation to the chest-left side. My left breast was burned so bad and so was the espohagus so why wouldn't they think the lymph nodes might also be damaged?? I think this may be some of the reason that people, LC patients included, have lingering pain.... I get so frustrated!!!! Anyway, any ideas on how to cope?

I have no idea if that is my problem or not. I don't really see my dr's too much anymore and when I asked them about out previously they pretty much dismissed me. I guess they don't consider this a LC issue--they think of it as a breast cancer issue. I've tried to research it on my own but can't find too much information on it. Does anyone here seem to have problems with it? I've had many nodes removed plus rads to the chest. I live in PA and the humidity seems to be really tough on me this yr. I don't know if humidy effects the lymph nodes or not?? All I know is that my arm is swelling (about 1 1/2" larger at night than in the morning), my arm pit feels swollen and my breast hurts. My bra size has even increased-- What is wrong with me??? Could this be lymphedema? Does anyone else have issues like this?

I have always been extremely skeptical about mediums and never really believed in them but this man has made a believer out of me. I've read his books and I've seen a couple of TV shows that he has been on. I would love to meet the man-I truely believe he has a gift. I've seen others on shows etc. and I believe that 99% are fake but this man just seems so genuine to me. According to his website he does phone, group, small group and individual sessions and I think it would be life changing (to me) to have the opportunity to work with him. As far as charging for his service-I agree that everyone charges for their services anymore. His fees seem quite reasonable and he makes himself available to anyone who would seek him not just the exclusively rich and famous folks. Maybe I'm gullible but he has made a believer out of me!

I feel the way you described so often it's scary. It's funny sometimes how this disease can effect you. My doctors told me about side effects but mainly physical ones-I think those are easier than the mental ones sometimes... a lot of times I worry about this monster coming back in my life all the time. And a lot of times it's more than worrying. I dwell, I panic, I obsess. It's like a thought that never leaves. When I'm really happy or having fun even for a minute there it comes like a flash through my head. i worry about buying things and paying them off. I worry I'm not enjoying my life enough... I mean damn, little things can still annoy me and I didn't stop and smell the roses today! then I beat myself up because I small things do annoy me. I run it through my mind--I had LC! I promised myself when I was going through treatment that if I survived I wouldn't let stupid stuff get me down but it still does. What kind of idiot am I? I just got married last Saturday. I didn't take anytime off work (went back on Monday) have to pay those bills... and I resent myself for not enjoying a honeymoon etc. But I couldn't because I had committments at work... who cares about work enjoy your life the monster could come back at any moment... but I need to pay bills... but you need to enjoy your life while you can... I feel like there is a tennis match going on in my head! This past week I've even been considering taking a 2nd job at night in order to get some bills paid off. But I know I'll get run down and I won't get to spend time wit my kids or new hubby. But I have so much debt that I want to pay off. when does it ever end? When does the monster ever go away? there is just so much to this disease that they don't tell you about. I wish I could talk to you in person we have so much in common. I play the same tough act at work-I'm good at my job but in the last year I've come to hate it. I'd like to move and get a job where people don't know I was ever sick. I'm so happy you bought that boat and you have your wonderful horse. Enjoy them as much as you can, as often as you can. We need to take each day as it comes and be happy in it.

I had terrible joint pain too when I was on the chemo. It seems to come with the wonderful combination. My arms and legs would just ache kinda like I a tooth ache feels. Mine went away after I was off the chemo for a while but every once in a while I still get it-just not so bad.

and I still have pain. I had two thoracotomys and then a pneumonectomy. All on the left side. Then shortly after that I broke one of my ribs-everything in there still hurts and I've got some very strange numbness going on. I start to panic every once in a while especially when I get the armpit sensations but hey, the ole body has been through a lot. 3 chest surgeries, chemo and rads-it really is amazing how much we can put our bodies through. The surgeon who did my last surgery told me about all the strange positions they put you in during surgery-they even dislocated my shoulder during surgery to do some work. I think it takes a long time to heal -- 2 months is nothing! As some have said you may have aches and pains for years afterwards.

I'll put this in the good news area too but I just wanted to share with each of you that.... I got married this weekend! I was blessed with a beautiful warm day on Saturday (here in PA) and the wedding was wonderful. My 3 children all participated in the wedding and it was a happy day. we've been together for 6 yrs and my last treatment was a little over 2 yrs ago. There is life after LC--and it is wonderful

Happy Birthday Lucie! Don--what a wonderful love story the two of you have! I've gone through my surgeries/treatment alone (with 3 young kids) and many times I've wished that I had someone to share my feelings with. Lucie is blessed to have such a wonderful caregiver and loving husband. Lucie--enjoy your special day and wonderful family.... you go girl!!!

MORE! MORE! MORE! people need to know that this disease is not caused by smoking. Smoking may be a contributing factor for some but not for all of us. Doctors need to pay attention to people that don't fit their criteria for LC patients. In order to do that people need to be advocates for their own health. One way to do that is tell our stories about diagnosis and perhaps lack of symptoms. So that people will understand what they may be looking for. you can get LC when your young, even if you've never smoked, or even lived with a smoker, you may not have a cough, etc. Mine was diagnosed because I had pain in my shoulder. I was early 30's, never smoked, no cough, no shortness of breath etc. I just had an ache that didn't go away. My PCP did an x-ray for bursitis and saw the spot. I think it's a great idea.

I debated posting this because it seems as though I'm always behind the times and out of touch with what goes on. On this board, with my doctors and generally with life but I thought perhaps some of you may not have seen this article. I read this in the March 15 issue of Globe magazine. It's one of those trashy magazines you get at the supermarket checkout line. First let me add that I NEVER actually buy this magazine (actually the Enquirer was sold out) but I felt like having a "non-thinking evening" so I did. The article is about a new cancer drug. Researchers from Baylor University Medical Center in Dallas are testing a vaccine called GVAX. Which "actually caused cancer to disappear in three out of 33 advanced lung-cancer patients." "In the rest of the advanced cancer patients the disease remained stable-that is, it did not spread for five months to more than two years." It appears as though this GVAX is made from their own tumor cells etc. i thought the article was very interesting... at least it reminds me that they are working towards a "real" treatment for this horrible disease. If anyone is interested in reading it let me know. I've scanned the article in and I can either sent it to you or I can post it.

I've been trying to gather information about Lymphedema on the net. I haven't been too successful especially with regard to LC. Mostly the information is Breast Cancer related. They removed lots of lymph nodes during my biopsy, then I had two of thoratic surgerys where 10-15 lymph nodes were removed in the mediastinum area/chest/arm pit area (they couldn't decide if I had LC or Breast C) then they removed 10-15 when I had my pneumonectomy. My armpit area swells and also the area just below where my scar runs along my back. My arm doesn't really fill with too much fluid its mostly just in those areas. Anyone else find this a problem? My pneumonectomy was on my left side and I've found from reading about lymphedema that you are not supposed to have IV's, blood pressure readings etc. on that left arm. Well, I just had surgery to remove a lump (cyst, thank GOD) on my wrist and I've been wearing a brace on my wrist. Between the IV they put in that arm, the surgery, the brace etc. I'm wondering if that was too much trauma to it and that has caused swelling. I'm hoping that maybe this is a common problem for LC patients too. Anyone with any advice??

I've tried to research it on the web but I'm wondering if any of you have come across this during any of your searches. Perhaps someone has a web site or link they could share? My tumor was a mucoepidermoid and was located in a lymph gland on my bronchial tube on left lung. It was very low grade. I can find a little information about them but 99% of it deals with them in the glands in the neck and throat. I can't really find anything about them in reference to the lung. If anyone has ever heard of it I'd really like to know. Thanks-

Heather - I too am scared. I was in my late 30's when diagnosed, non-smoker and I couldn't believe what they were telling me. My doctors totally screwed up my diagnosis and didn't know what to do with me but my insurance (HMO) wouldn't let me seek a second opinion. Every single test was done once, than twice and they could never figure out what was going on. Unfortunately, now I just can't seem to make myself go for any scans or tests. I'm just too afraid. I'm up all night worrying to the point where I am physically sick and then I end up just canceling the appointment or don't show up. The doctors messed things up so much that I just don't have any faith and what they tell me anymore and I know that if they tell me I have "it" again I will not be able to handle anymore of the treatments. I'm constantly scared about every ache and pain. Right now I have some pain in the left side (ribs). I've had it off and on since they did the first surgery. I had a pneumonectomy in 02 but was given massive radiation to the lung prior to that. My tumor was in one of the lymph nodes on one of the bronchial tubes that go into the left lung. Both my lungs were biopsied and nothing was found. When I was FINALLY able to get a 2nd opinion almost 1 yr after diagnosis my surgeon was able to remove the tumor but due to the radiation I received they had to also remove my lung and the paracartium (the sac that holds the heart) because the entire area was destroyed. Last year at my 1-yr pneumonectomy anniversary they did an x-ray which showed a broken rib and a broken/displaced rib. That is what they felt was causing my lingering pain in my left side. From the rib poking me. Sometimes it really bothers me... like now. When they saw the broken rib the wanted to do another bone scan just to make sure... but I refused. So they said a ct scan... i refused. Well now I'm approaching my 2nd anniversay. My chest hurts, my arm pit feels weird (which they originally told me is due to swelling as they removed a tremendous amount of lymph nodes from my left side) but I've canceled my chest x-ray twice. I'm just too afraid... I'm up all night worrying about the pain, or why the pain comes and goes, where it is... everything. BUT I just can't handle the tests and the scans. Sometimes I just think I'll go crazy from worry, other times I wish I was in a car accident or something and they would do x-rays or whatever and I wouldn't even know it. I know where your coming from and from what your saying you still manage to have the test and do what you should do. I think worry will always be a factor but you are able to overcome it. I don't think you can ask anymore of yourself.

Fay- I also had a pneumonectomy and I've been trying to reasearch this syndrome. I can't find much information on it. could you share it with us/me? I have lingering pain/problems and I'd like to understand what is happening. My docs just pat me on the shoulder and tell me that it is normal following surgery to have some pain.... well I want to know more. What are your symptoms/problems? Fell free to e-mail me or post. I'll keep checking.