Debi

Norme, Will sure miss you while you are gone. I'm sure that the trip will be okay.. I understand your nervousness, that's a long road trip for well people to take but I have a feeling it will all work out for you and Buddy! Try to enjoy..... you'll be in my thoughts! And drive safe!!! Debi

Both my regular doctor and Oncologist had expressed concerns when they found out I did not have a bone scan or brain MRI before surgery. They told me that was usually routine. I have no clue why I didn't have those tests but told my Onc to do it on up- I didnt want to wonder whether something was overlooked. I have been holding my breath for 24 hours since I had a brain MRI and a bone scan yesterday . I just received the results not too long ago from the Oncologist's office and they said that all was normal!!! First time that I have really had to go through the "waiting for test results" syndrome AFTER surgery and thankfully won't have to again until November 17th when I have a chest xray and lab work. On the home front, my son started pre-K on Wednesday and I started back to work Monday. Everyone at work is saying I look great .. its amazing what a little rest can do for you! I feel good and I think I'm finally ready to get on with my life. Debi

Woo Hoo Don!!!!!! Am so happy for you and Lucie!!! Looks like that sun is starting to peak out a bit for both of you!! Debi

Fay, I wanted to tell you that you are an inspiration here and that I strive to get the emotional serenity that you have. You have always taken the time to answer my posts, no matter how trivial or whining they have been. I have always smiled when I see your name as one of the people answering the post, because I know that your response will be right on the money. Thanks for always being there for me and others, and for providing an example of grace and dignity! Now, that said, lets put the gloves on and fight this damn thing. I'll be over here if you need back up!!! Debi 46 years old Stage 1A-NSCLC Surgery June 16, 2003, mid & upper lobe removed

Jenny. How wonderful!!!! Congratulations...now take some deep breaths...I'm sure you haven't been breathing waiting for ALL those results!!! Debi 46 years old Stage 1A NSCLC Surgery June 16, 2003- mid, upper lobe removed

Deb, I am so sorry that things have gone the opposite way of where they need to be for you. I hope that they will change for the better again and that your dad will be feeling well enough to make the trip upstate. My dad was from Upstate NY and I know the mountains always brought me such a sense of serenity. Will be thinking of you and your dad on Monday! Debi

hehehehe MY kind of exercise!!!!!!!!

I've posted just recently regarding this issue because I couldn't decide what to do myself. I, like Muriel, was not completely sold on the statistics in the report and the fact that it was one study of 1800 plus people. I also have questions regarding why Oncologists have "jumped" all over this issue but Surgeons and Pulmonary Specialists seem to be holding back. As I've posted before, I'm a cynic...and wonder how much of this big drive for adjuntive therapy is for the additional money that it will provide to the Oncologist's pockets. My Surgeon and Pulmonary Specialist had told me that I did not need any follow up chemo...the Oncologist that I chose, tells me that I need treatment every 3 weeks for 6 months after employing what could be construed as scare tactics. When I had questioned my surgeon about this report, he had kind of waved it off...saying that it was too new, the study group too small and the projected survival increase for Stage 1 too small to outweigh the risks of chemotherapy. He had said that it would be better to heal and to build my strength and immune system up so that in the future, if something did show up, I would be strong enough and healthy enough to fight it. He also mentioned something about the body building resistance to chemo. Basically, his and the Pulmonary Specialist's opinion was..its gone..I have over an 80% chance of making it...get on with my life, follow up every 3 months and that's the end of it. They both told me to start living again. My additional concerns are that I am a manager in a Call Center that during the next few months will ramp up to 450 people in one huge building. Traditionally, this is a hotbed of germs..flu, bronchitis, what have you and being a manager, I can hardly afford to avoid people. If I have the chemo and compromise my immune system, what are my chances of getting sick and perhaps becoming a fatality that way? Not meaning to sound dramatic...but I'm sure its happened...I just can't seem to find any statistics. And why put myself in that position for something that I feel isn't a sure thing anyway? Hell, if something came out that said..here take this chemo and you will be cured and never have cancer again..guaranteed....I would quit my job if I had to. But this study is not giving me anything like that. It is a huge IF as far as I'm concerned. And speaking of ifs..if my surgeon and Pulmonary Specialist HAD recommended follow up chemo also, I most certainly would have gone for it since those are the people I trust the most. I trusted my surgeon enough to cut me open with whatever they use to cut you open , I don't think you can trust a man any more than that. Why should I change now? I guess ultimately, my decision has been made and that is, at this point anyway, I will not be taking chemo. There just isn't enough proof for me that this would increase my survival rate significantly enough to put my body through this while I'm still recovering from surgery. If, at any point in the future, something does show up on an xray...of course, I will immense myself in whatever is suggested. But, for me, one study does not warrant taking something that is for treating cancer and turning it into a preventive measure that may, or may not, work. I know that public opinion seems to be toward getting the chemo. That is great...and no matter what decision anyone makes...it is their decision to make and will be the right one for them. What I have written is only my opinion and one that I know is mine...I have no clue if it is right or wrong, I just know that it is mine and the one I am going with. We all need to make our minds up with whatever knowledge we have and like I've posted before, the important thing is to decide what to do and not look back. No regrets. I may end up with a recurrence 8 months from now and want to second guess my decision...however, I may still end up with a recurrence if I take the chemo. Who knows about this damn disease?? Anyway, sorry for the long winded response but those who know me expect nothing less!! Debi 46 years old Stage 1A NSCLC Surgery June 16, 2003, Mid & upper lobe removed

Dear Linda, Welcome to the board...sorry that you have to be here, as always, but welcome anyway!! I can't give you any advice on the things you want to know, but I can assure you that you are definitely not alone. I understand you being scared...I'm scared too. In fact, most nights I wake up (like tonight) with cancer on my mind and can't go back to sleep. Today I went to a new dentist and had to fill out one of those forms they give you. I had a chill go through my body when I got to the part about diseases that you have, and I had to check cancer. It just hit home hard for some reason...the first time that I acknowledged it, on paper. No more filling out doctor forms quite the same. I think that half the battle with cancer is conquering the fear of it. Especially after surfing the net!! I went to some sites that made my hair stand up straight! The most important thing in your post was: The statistics aren't promising,in fact,they will scare you to death but I want to beat this thing. I WILL NOT GIVE UP! Sometimes the fear of everything makes me forget my resolve but it always returns. As you'll see from this board, sometimes people have bad days, and that's okay. When its your turn to have a bad day, you'll know that its okay to write about it...everyone has them! But as long as you keep returning to that positive attitude, that YOU WILL NOT GIVE UP you are ahead of the game. I wish you lots of luck with your fight with this. Please keep posting and let us know what the Oncologist says. Debi 46 years old Stage 1A-NSCLC Surgery June 16th, upper and mid lobe removed

I wrote my congressman about a month or so ago..I used a form letter that someone had posted here and changed it a bit, adding my personal connection with lung cancer onto it. I sent it to him and about a week later got a canned response..."thank you for contacting Congressman so and so...blah, blah, blah!!" Oh well, I thought, I tried. Well, today I got an actual response from the Congressman himself who commented on my personal story and added: I agree with you that we must do everything possible to protect our citizens from the horrible effects of lung cancer. It is certainly surprising that such a smaller percentage of funding for research is devoted to lung cancer as compared to breast cancer. I will look into this matter, and as Congress debates the funding levels for cancer research in Fiscal Year 2004, I will certainly keep your thoughts in mind. Wow..he actually READ what was in the letter!! I'm impressed!! THis is neat...I have a new pen pal now! I'll have to send him some Lung Cancer facts and trivia next!! I'll wait a bit so I don't look like a stalker! Debi 46 years old Stage 1A, Upper & Mid lobe removed June 16, 2003

Sending lots of good wishes your way... Debi

Muriel, Sorry that you have to be here, but welcome to the boards. I am kind of in the same boat as yourself and posted recently regarding this same dilemna. I had alot of great opinions from folks..check under "Early NSCLC" and the subject is "What to do?". There was so much great info posted pertaining to your question. I saw my family doctor yesterday and he told me that in medicine, there are many opinions and "sides" - and they are not necessarily right or wrong. Basically, he told me to listen to the doctors that I trust the most, and go with their advice. I'm still researching the different options, but am leaning toward the every 3 months for 3 years followup only without the chemo. My doctor is consulting with an Oncologist that he trusts and is going to call me with yet another opinion. After that, I am going to have to decide once and for all what to do and not look back afterward. Best of luck and I am sure that you will make the right decision for you, no matter what it is. It's just so difficult getting there! Debi 46 years old Surgery June 16th, 2003 Stage 1A, Upper and Mid lobe removed

Cheryl, I am so sorry that you feel bad but glad to hear that you are done with the chemo and scheduled for the surgery. Hope you feel 100% better in the days ahead!! Debi 46 years old Surgery June 16, 2003 Stage 1A-upper & mid lung removed

Janet, I read your post and just wanted to let you know that I am thinking of you. I don't know much about this stuff myself, but I do know from the boards and from what my doctors have said that there are times when results are not accurate and something that supposedly is there, really isnt. I had a Pet Scan myself, back in February and my tumor did not register that it was malignant. They had me wait 3 months to get another Cat Scan to see if it had grown, and that is how they found that it was most likely cancer. The Pet Scan, in my case, was not accurate at that time. I wish, like Tiny, that I had some magic words to help you get through the next few days, but I don't. All I can say is that I will be thinking of you and will be here to read whatever words you need to write to get yourself through this. Hoping for the best!!!!!!!!! Debi 46 years old Surgery June 16, 2003 Stage 1A, upper and mid lobe removed

LOL Dave!!!

Eileen, I had my right upper and middle lobe removed about 2 months ago. I still have alot of numbness and tingling and that very wierd poking and tugging in my right chest...it almost feels like I wore an underwire bra 2 sizes too small for WAY too long!! However, the pain has lessened and lessened...the key word is that horrible word...time! In time, it does get better. Every week now, I feel a vast improvement from the week before, both in comfortablility and breathing. Can't help you with the emotional part...I'm trying to get some sort of balance there myself. I think it probably also takes time and learning to not look for that proverbial, dreaded other shoe dropping down. We'll all get there in our own way I think. In the meantime, I vote for the teddy bear!! Debi

Welcome Snowflake and glad that you came out of your lurkdom!! Sounds like you have had a tough year but it also sounds like you have managed to get a grip on things! You give me hope that I will somehow manage to reign in my emotions about this sooner or later. I'm currently on this roller coaster ride (I always hated those damn things anyway) and would like to get off, so believe me, I know where you've been! Hope to see you keep posting...enjoy your humor and hey, I always welcome another novelist! Debi 46 years old Surgery June 16, 2003, Mid and upper lobe removed, Dx Stage 1A

Janet, I understand. Although I'm only starting the journey that you have already been on, I feel your fear. I think our battle is with lung cancer of course, but the other part of the battle is with our mind. I know that my mind can wreak havoc on me... here it is 3:00 in the morning and I can't sleep because my mind is going in circles. The fact that your doctor said 90% chance that everything is okay, I think is a real good sign that you will be okay. I mean, those are better odds than we live every day, right? And as far as being one of those people who make it through this...sounds like you are on your way! It is good though that you took matters into your own hands and ended up having the Pet Scan done rather than wait for 6 months. Smart move!! I will be thinking of you this next week and hoping that all works out well for you (it really does sound like it will!). Please post on the 18th and let us know how it went! Debi 46 years old Surgery June 16, 2003, upper & mid right lobes removed Stage 1A

Thank you Tiny and David but I'm afraid I look like the great pumpkin!! I couldn't shrink the darn picture anymore...but I wanted to have a face so it will have to do until I get a new one!! Picture that is...not face!! Debi

By the way, did someone actually tell you that we were missing your jokes?

Thanks so much all of you, for your input. As someone who can't decide on a daily basis where to go for lunch, it is greatly appreciated! I agree with much of what everybody said and I guess thats why it makes it so difficult TO decide. I have made an appointment with my family doctor for next Tuesday and will talk to him about this, maybe getting a referral for another oncologist (hell, I can hitchhike! ) In the meantime, I'll check out stuff about chemo and all on the internet so I'm better informed on that phase of this never ending horror show. I guess that's why this hit me so hard. My specialist and surgeon have been saying since the surgery that it is over..to put this behind me and learn how to live again. I hate to beat a dead horse but like I said earlier...these 2 are extremely involved in cancer care and I cannot find a reason why they would not be suggesting chemo for me if it was necessary even though they are NOT Oncologists. Eileen, what you just posted is basically what my Surgeon had told me a few weeks ago. He had said that if I am "clean", lets not "waste" the chemo and weaken my body for nothing. He told me that with the 3 months followup for 3 years, we will save the chemo and rad for when and if we know we need it. On the other hand my Pulmonary Specilist just said there is no reason..that from what I had and how small it was..my odds are over 80% already. Who knows, huh?? Anyway, thanks much all for the advice...you guys rock!!! Debi

A sweet grandmother telephoned Mount Sinai Hospital. She timidly asked, "Is it possible to speak to someone who can tell me how a patient is doing?" The operator said, "I'll be glad to help, Dear. What's the name and room number?" The grandmother, in her weak tremulous voice, replied, "Miss Holly Finkel, in Room 302." The operator replied, "Let me check. Oh, good news! The records say that Holly is doing very well. Her blood pressure is fine, her blood work just came back as normal and her physician, Dr. Cohen, has scheduled her to be discharged on Tuesday." The grandmother said, "Thank you, that's wonderful! I was so worried! God bless you for the good news." The operator replied, "You're more than welcome. Is Holly your daughter?" The grandmother said, "No, I'm Holly Finkel in 302. Dr. Cohen doesn't tell me crap."

Hey Genie... Glad to see you made it!!! Welcome!!! I am sure that you will get lots of support and hope here!! Debi

Haven't been to the board except to add my horribly big picture lately due to actually being busy. Now I'm in a quandry and need advice. Don't be afraid to give it..I am not going to jump and do anything that anyone offers..I just need to weigh my options and need opinions of experts! I went for my Pulmonary Specialist appointment yesterday and he said all is fine. I told him that I had made an appointment in my town with an Oncologist for today and he was a bit surprised, then said great! He spent most of the visit yesterday assuring me that I was going to be fine..that I need to accept that and will be able to sleep, etc (I've been pretty stressed I guess). He said that I will need to follow up every 3 months for 3 years, etc but told me that my family doctor seems more than capable of doing that if I wish and he stressed that this is purely preventive. He also told me that he didn't have me meet with an Oncologist after my surgery because I was cancer free, and there was no urgent need...if there was, he would have been the first to do so (my pulmonary specialist is also the medical director for the Cancer Treatment Center of America). I asked him about the recent paper about chemo after lung surgery, etc and he said that he was not agreeable to me receiving chemo unless it were some type of low dose chemo that was tolerable but he doubted that would even be suggested. He told me that he would be greatly surprised, if after seeing the pathology report, that the Oncologist here would want me to have any chemo. ..welcome to my home town! Went to the Oncologist today and first thing he brought up was the new findings and how he thinks I should have a shunt surgically implanted and have chemo for the next 6 months every 2 to 3 weeks. He said that even though the nodule was small and caught early, since I am so young it must be an aggressive cancer and he thinks I really need to be sure. Then he preceded to tell me horror stories about other patients who didn't and it came back. His words.."If I was 70, he wouldn't bother...but since I'm young..why not?". Of course, him and his partner are the only oncologists in town...they come down from OKC once a week. So here I am ... back where I started from with no options for 2nd opinions in this damn friggin town. My Pulmonary Specialist had said not to do it if this Oncologist suggested anything above low maintenance. My Surgeon had told me that he didn't want me to have chemo, he did not see a need. When I told the Oncologist that both my Surgeon and Pulm Spec. had said they didn't see a need, he told me that the paper is fairly new and they must not be up to speed. I highly doubt that since both are affiliated with Cancer Centers. If I get a referral from my Surgeon or Pulmonary Spec to see another Onc, that will be in Tulsa where they are....4 hours away. I can no longer drive the 8 hour round trip, my car is getting old and I'm going to end up on the side of the road one of these times. Okay, so after the usual lengthier than War and Peace post...if anyone is still reading , my question is this...what the H should I do??? The Onc gave me 2 weeks to think about this ..they made my next appointment on my birthday...thank you!! Anyway, I'm leaning toward telling the Onc, no thank you and hooking up with my family doctor who has been brought up to speed with updates from the Pulmonary Specialist. I mean, this guy is my hero anyway, he is the one who found the little bitty shadow! I can schedule my tests every 3 months and if something comes up, we will deal with it then. I can't help but feel that this Oncologist is trying to make money off me...I could be 200% wrong but hell, this is a big money maker, isn't it? I know that there was a paper that came out but are my Pulmonary Specialist and Surgeon THAT wrong? Something else that bothered me...my Pulmonary Specialist didn't take an xray yesterday when he heard that I was seeing the Onc today and he said that the Onc would take one. When I went to the Onc, he had blood drawn but no xray. I asked him if he was going to take a xray of my chest and he said no..there was no need. Doesn't he need a point of reference since he has no other xrays?? Or am I just being picky because I'm a big chicken and I don't want a shunt and I don't want chemo unless I know I need it?? Or will I be sealing my fate by not getting it?? Help!!! Debi

Just wanted to ask if anyone has experienced numbness all over their body after surgery? It is almost 6 weeks and I am still experiencing numbness...my legs, my arms, my face, my scalp..you name it, it feels numb. Not prickly numb but like a light novacaine numb...when I touch my nose it feels like after you have a drink or two. Its there but its numb. I know people have had certain parts numb but all over?? When I went for my 2 week post op I told my surgeon about it and he just waved it off and said I just had major surgery. He had told me originally that the incision cuts through so many nerves that it takes a while to "reconnect" but he didn't say that it would be my whole body. I'm wondering if the epidural that I had in for 4 days messed with my spine and the nerves connecting there because it is still "twingy" there occasionally. In the meantime, I feel like I'm going insane. I can't explain how strange my body feels. I should just be glad that it is not pain, but this numbness is so disconcerting, that some days I feel like I'm just crazy and its not physical, its in my head. I mean, why should my whole body feel like this? Is this normal? I'm not on any medication either, in the beginning I thought maybe it was the pain pills. Anyway, if anyone has ever experienced all over numbness after surgery, please let me know so that I know its not in my mind and I'm just insane! It keeps me from sleeping..Im afraid that it will never go away and I end up staying awake all night fearing everything. It would help if someone else has felt this or has any idea of what it could be. Thanks, Debi 46 years old Stage 1A- Surgery June 16,2003- right mid and upper lobe removed