paul Posted August 12, 2004 Share Posted August 12, 2004 Hi everybody, its been a while since I last wrote so I have put pen to paper as they say, I have been reading and catching up with the new and the old and the very old guys that are still on the board. 2.1/2 years ago I had a pnumonectomy on my left lung that was due to lung cancer, and unfortunately I am still in really harsh chest pain, I take 400mgs of tramadol daily,otherwise by midday I am like a crippled old man and can't move very well with the pain, although I can't do much any way as I get out of breath very easily. I dont know how much longer I have to suffer with this pain, but I do know I am still here and breathing which thankfully was proberbly down to the man above ? as I have had friends who have not been so lucky. My main point is does any body on the board know how long it is after surgery that you can say you are cancer free or is there not a time period of being in fear of this dreaded ogor, I would appriciate any feedback, thanks Quote Link to comment Share on other sites More sharing options...
Fay A. Posted August 13, 2004 Share Posted August 13, 2004 Hello, Paul, and welcome back! It's good to hear from you again. If the docs were able to remove all of the cancer at the time of surgery, and you have not had a recurrence of the cancer since your surgery, you would be considered 'NED', or No Evidence of Disease. That's cancer free in my book. I think that the docs look at 5 years with no recurrence of cancer as being "cured"... but my personal opinion on the subject is that if you've been diagnosed with Lung Cancer you should be vigilant...even after 5 years. Because this is a sneakly little beast, and the sooner you catch it it it should show up again after 5 years the better your chances of getting rid of it again. I understand about the shortness of breath and the post surgical pain. I'm just very glad to still be able to breathe, even if I do so at a faster rate than the most others. Once again, it is very good to hear from you and to know that the sun shines on your face. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 13, 2004 Share Posted August 13, 2004 My understanding from the miedical community is that 10 years out without recurrence was considered "cured". Some docs have updated this notion to "once having cancer, never completely out of the woods". To me, it's knowing that and getting on with life. The more time out, the less likely it would occur. With surgery, if the surgeon truly "got it all" and we could be certain of that, then we could say, "cured". But that is difficult when the start of a tumor can be a group of cells that is initially undetectable. NED, or no evidence of disease, is the next best thing to "cured" in my book. I'll take it. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted August 13, 2004 Share Posted August 13, 2004 Hello Paul, I too have to take considerable pain meds to be able to get up in the morning. I too am chronically short of breath. I am able to work (at a desk job) and ferry my kids to their activities, grocery shop and cook (minimally) and VERY LITE house keeping. Life is good and I count my blessings. Considering the size of the tumor removed, and the cutting necessary to remove it, I will likely never be free of pain, but I can accept that I need meds to function. I am almost four and a half years out, and my surgeon and oncologist are delighted, considering me a "done deal". They will NOT mention cure, I don't think it's in their vocabulary, but I have been NED for over four years. I'm very happy with NED, and glady accept in trade the restrictions on my lifestyle. That's okay, since I've found my priorities have changed considerably. Wishing you luck, and life free from pain, even if it is a bit slower... XOXOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
jamie Posted August 13, 2004 Share Posted August 13, 2004 Paul, My dad had a succesful surgery back in june. Further test show he is NED!!! The dr. wont say anything about being cured or remission but we have full faith. I think after the 2 year high reoccurance rate, if my dad is still NED, he will feel comfortable to celebrate. Im not sure what the guidelines are though. Jamie Quote Link to comment Share on other sites More sharing options...
Tami Posted August 13, 2004 Share Posted August 13, 2004 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. Quote Link to comment Share on other sites More sharing options...
Elaine Posted August 13, 2004 Share Posted August 13, 2004 Tami That's horrible about the lymphedema and your insurance company! Have you appealed and applealed? How can it be that a person doesn not have the "right" kind of cancer to get a specific treatment. I know it is possible for lc patients to have lymphedema, so what is the deal? (I know it's unusual side effect of surgery, but.....) The more I hear.... Love to you. You ARE a hero. elain Quote Link to comment Share on other sites More sharing options...
paul Posted August 13, 2004 Author Share Posted August 13, 2004 Thanks for the feedback on this pain subject , as When I hear of so many people who have gone through this painfull operation I get reassurance in my mind from this board,that I am not the only one with the pain and its NOT JUST ME who's hurting, as after a while you get to thinking its just YOU, but I don't know how you cope with one job tami never mind two, well lets hope that someday the pain stops!!!!!!! Quote Link to comment Share on other sites More sharing options...
Tiny Posted August 14, 2004 Share Posted August 14, 2004 Paul- I hope you will appreciate a small bit of humor , but from your avatar it looks as if you are moving REALLY well! Seriously, I don't think the concern and anxiety ever go away. Fay said it all best. Diligence is in order for the rest of your life...this is the "new normal" for us. Those who ignore that precept sometimes pay with their lives. I'm wishing you well and continually cancer free (i.e., NED). Quote Link to comment Share on other sites More sharing options...
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