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Hi Everyone my names Debbie 43 yr old and I am a newcomer


butterflylady0607

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I just had a pneumonectomy on july 11,2003, I was dx with neuroendocrine carcinoma large cell carcinoma. I was wondering if there was anyone else out there with the same thing. They were able to get all of the cancer and it was not in my lymph node which is a good thing. They want me to have chemo therepy but Im not sure i wante to go through all that. the Dr told me that there was only about a 10 percent chance that if there was any more cells in my body that the chemo would kill it so ive decieded at this time not to go through anymore. something else that i really didnt understand sand is i was told if they removed my lung and it wasnt in my lymphnodes then there wasnt anything else to worry about. So im totally confused about the chemo at all. I also have advanced emphasyma in my other lung and have a really hard time doing to much of anything . Just trying to walk around the grocerie store is alot for me. I was wondering if anyone had any suggestions. I dont mean to be long about this but i guess this is a good place to vent :) I have been so depressed over this whole thing i feel like im useless and also feel like no one else is ever going to want me because im not a whole person. Ive been to the dr and now on meds for depression. Its gotten so bad that i have started smoking again which i didnt want to do i was doing so well for so long. If anyone could give me some of there thoughts I would very much appreciate it.

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Welcome -

Sorry you have to be here - but you are always welcome to vent. I also had a neuroendecrine carcinoma, although mine was a typical carcinoid. I had a rough time breathing after my lung was removed, too, and was on oxygen for about 5 months. I think you are pretty normal - it just takes time to heal and get your strength back. One thing that everyone stressed was as soon as you are able - walk. I know I had a hard time doing 2 minutes on the treadmill, but now I am back to my "before surgery" walking. There are still days when it's harder than others, but I have been trying to still walk.

As far as the chemo after surgery, well I think that's up to the individual. I was told it wasn't necessary because of the kind of tumor I had, but I did have chemo before surgery. With all of the strides being made now with the drugs and the way they are administered, chemo was nothing like I expected it to be. It was, for me anyway, very tolerable.

Being depressed is a totally NORMAL reaction, I think. You have been through HE*$ and back - but here you are - a SURVIVOR! You may not realize it yet, but perhaps you will inspire someone else who has just been diagnosed. Perhaps their family just got the news and don't know where to turn, etc. You are here for a reason - so come and share with us - we are glad to have you. I will keep you in my prayers as you recover.

Terrie

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1st welcome. 2nd get an antidepressent now. We all needed one at one time or another to get through this. Perhaps Wellbutrin, it may also help you to leave those cancer sticks alone. If you have Emphysema , one lung the last thing in this world you need is a cigarette. I know , it is like little people up in your head telling you a cigarette would make you feel better, they are not your friends, they lie!!!! Quiting smoking alone increases your chances of surviving. It takes time for your body to ajust to the surgery, you probably will improve, less shortness of breath after a while. I guess that is enough for now. You are young, I am sorry you have this disease but I am glad you have joined us. You are important. Please take care. Keep us posted one how you are doing. Donna G

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hi, welcome you.

As far as I know, if you take the advice to get the chemo, it will minimize the chances of spread and recurrence of cancer. The dose or frequency may be less comparatively. Don't be afraid, this is good for you. Many patients experience being treated by chemo and they are fine. There is nothing to be afraid of, many side effects will be gone after all chemo finish, the side effect is temporary.

Think positive and it does help your progress as well. Don't smoke anymore and it will hinder the progress of treatment (proved with scientific research already). You can do it, believe yourself, you are suggested to come to this board more frequently. You are not alone and you will feel better when you read more stories of us.

Welcome and think positive. :D

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Welcome Butterflylady,

Just what are those horrible cigs going to do for you but possibly kill you. They certainly aren't going to make you breath better as I am sure you know. How can you go through what you have been through and light up a cig. don't tell me you can't help yourself because I have been there and know better. I was a two and one-half pack a day smoker and know that where there is a will, there is always a way. That little devil is sitting on your shoulder so kick him off and go get a carrot out of the refrig.. Your chances of being a survivor will be much much greater. I am telling you this from my heart.

You asked if the lymph nodes don't show cancer then why have chemo. This is a choise you must make but if it were I, I would go for the chemo, 10% is better then nothing. For as long as I have dealt with cancer as a caregiver, I know that cancer may not show up in scans or any other test but it can still be in there. that is what is so baffling to the cancer world of scientists. One day nothing shows then bang, its back. Where did it come from/where has it been??????? new reports show that it is now better to take chemo then not.......

Donna is a survivor and her suggestion of taking an anti-depressant I am sure is good advise for the present time..

YOu say no one will ever want you. Let me tell you that what you have been going through and what you have survived have made you one he///of a person and the better for it for you have learned to love each day, each person, and most of all yourself for you can and will work on your recovery to be a survivor for many years down the line. God Bless

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Hi Debbie!

I recently had surgery in June and had two lobes of my lung removed.

There had been a study released in May which said that adjuvent chemo (chemo after surgery) may be helpful in preventing future recurrences in cancer. I think that alot depends on the stage that you are in (sounds like you are Stage 1a?). I am Stage 1a and according to information I read about the study, the outcome shown in Stage 1A participants was that there was no marked improvement in survival. The study did show that there was a 5% survival increase in Stage 1B survivors. Their way of thinking now is that if their are microcells of cancer in your body, they will not show up until they have "grown". By getting chemo, there is a chance that you may get rid of those cells is the new theory.

I personally decided against chemo as a preventive measure because I felt in my case of being 1A, there was no evidence to show that it would help anything. My surgeon and Pulmonary Specialist had said that I would have an 80% + survival rate over 5 years and I will have followup checkups every 3 months for 3 years. I feel that follow up chemo for early stagers is a very personal decision to make and one that you need to make with no regrets. If you are comfortable with the decision that you made against chemo, then that is the right decision for you. This is just my opinion of course!!

Welcome to the board although I'm sorry you have to be here. Good luck with stopping the smoking!!

Debi

47 years old

Stage 1A - nsclc

Surgery June 16, 2003 - Mid & Upper lobe removed

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I am a Stage IV, formerly a Stage IA. When I had my surgery, chemo was not an option. Now it is. Had I just had my surgery and know what I know now, I would take the chemo in a heartbeat. I was told that I would most likely stay a Stage I. Not to be. Now the protocol is to do chemo following surgery. Follow the protocol, take the chemo. Don't take the chance. I believe seriously, I would still be Stage I, instead of Stage IV. I can never go back to I. I will always be a Stage IV. Take the chemo. Don't end up like I have. My lymph nodes were also clear, at surgery, now read my signature.

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Hi and welcome, I like Debi (two posts above) , had stage 1A-over 3 years ago and did not have chemo nor radiation---my surgeon and onc said it would do more harm than good at the stage I was at with no lymph node involvement---

It is a personal decision---there are no guarantees either way ----I for one am very happy with my decision----I know the risks, I also know that chemo is no guarantee that it will not return---I just chose to go the route of no chemo which may not be right for everyone---

see below from medscape:

Medscape: So from a practical standpoint, who would seem to most benefit from adjuvant chemotherapy?

Dr. Hanna: There are certainly patients who could benefit from adjuvant chemotherapy, particularly patients who are at high risk for distant metastases. But there are patients for whom it should not be recommended. A patient with a small stage IA tumor would probably gain very little benefit. Patients with bronchoalveolar carcinoma, which is not traditionally a chemosensitive tumor, would also likely not benefit. Those who have comorbid conditions, who are slow to recover from surgery, who are not appropriate candidates for cisplatin-based chemotherapy, and those who have undergone surgical procedures such as pneumonectomy would probably not be good candidates. The patients who should probably be offered chemotherapy are those who had multilevel nodal disease, who are most at risk for distant metastases. Careful patient selection here is key.

regards and good luck with your decision

Eileen

stage 1A lobectomy 6/00

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Hi Debbie.

I've been around for quite some time since my left pneumonectomy in 1977, and leading a fairly active life as well. I'm off to work right now, but you can browse the General Forum for titles like, "Race Results", "Off to the Races", "If no one Objects, I'd like to Post my Story Again", and "An Update on The Smiling Biker". You will see that there can still be lots of action when you are only puffing half as much air. Take care Debbie,

David P.

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Hi Debbie, (love your web site)

I’ve found taking one day at a time works best for me. I do not worry about what happened in the (cannot change it) passed. I do not worry about the (not here yet) future. I walk an hour a day whenever I can where there is a lot of green. I find that comforting and occasionally I do see butterflies. I spend time with family and friends also. The days I cannot do anything I rest, rather then push and get frustrated. Also please stop smoking. I saw a picture of you on your web site and you have a smile that lites up the world. There is someone out there for you and you are a whole, very talented person. Did you try a support group? I go to The Wellness (www.thewellnesscomunity.org) Community. They have them in your state. Hope this helps you. Take care and God Bless.

Rich

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Hi Debbie, (love your web site)

I’ve found taking one day at a time works best for me. I do not worry about what happened in the (cannot change it) passed. I do not worry about the (not here yet) future. I walk an hour a day whenever I can where there is a lot of green. I find that comforting and occasionally I do see butterflies. I spend time with family and friends also. The days I cannot do anything I rest, rather then push and get frustrated. Also please stop smoking. I saw a picture of you on your web site and you have a smile that lites up the world. There is someone out there for you and you are a whole, very talented person. Did you try a support group? I go to The Wellness (www.thewellnesscomunity.org) Community. They have them in your state. Hope this helps you. Take care and God Bless.

Rich

PS: Frogot to sign-in on the first post.

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