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Manifest

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Hello !

I have been reading this site a good bit lately and it looks to be such a good source of encouragement and information that I am glad to have found it.

I am a 46 year old male, married for 28 years this March. I have 2 children 22 and 18 and until recently thought I was in good health.

I did smoke for much of my life and always knew that could be an issue but like most other smokers I just could not quit. All that changed in December 06 when my wife and I finally threw them down and we have not slipped. We had joined the YMCA in our area and were starting to get in shape and put our lives back into order.

This month I felt kind of bad and went to the doctor who suspected bronchitis but had and x-ray done. By the time it was read I felt fine again, but the xray showed an area of concern. He sent me to a lung doctor who confirmed the xray and sent me for a ct scan.

The ct scan confirmed the area and they then sent me for a long needle biopsy. This showed that the area was cancerous NSCLC consistant with Adenocarcinoma. They then sent me for a PET scan and I just got the results from it.

They were not very encouraging in that it was staged at a III and probably inoperable as it stands now. My lung doctor has sent me to a oncologist and I have that appointment tomorrow.

I am really having problems remaining positive now and it seems the bad news is continious. Tomorrows appointment may provide what I am missing, but with the prognosis should I be hunting additional sources of opinions ? or any ideas on what I should be doing now ?

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Welcome, welcome, welcome, Manifest, to a place of information, support, compassion, and friendship. It sounds as if things are progressing just the same as it did for most of us here. Before taking any more steps forward, be sure you get all the info together from everything that has gone on so far.

As you can see from my Profile ~ I was dx at stage III ~ and depending on who you were asking, it was IIIa OR IIIb. I sought three additional opinions after I received the local doc's dx. There are many of us here at that stage or even stage IV who are living life with good quality too. We do recommend second opinions here. That way you never will second guess yourself that MAYBE there was something else you shoulda, woulda, coulda have done.

If you read my story in the My Story forum, you will see that I was declared inoperable just as you have been. There are others that have not had surgery and are doing fine too. So please do not despair. There is HOPE ~ that is for sure. For now, step back, take a deep breath, get your info together, and be sure to post your Profile as the rest of us have. You will see the My Profile at the top of the page (in the purple). Just click there and follow the instructions. Having that posted will help members help you better, as well as saving you lots of time repeating over and over.

Be sure to let us know what happens at your appointment tomorrow. Then we'll help you go from there.

Good luck.

Kasey

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its a lot to handle at first...they toss so much info at you its hard to not go crazy. wait until you talk to the onc and lay out a plan of action. at that point things come more into focus.there are many on this board that have been in the same boat you are.....one lady in particular comes to mind who is honest as the day is long and will lay it out straight for you...she probably doesnt know who im talking about but all of us on here respect her.

let things fall into place get a plan of attack..the first thing i learned coming on here is there is not a question you cannot ask..somebody has been there...stay positive keep posting.

dave

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Welcome to our group! First of all, many people staged as III have very good results with chemo and/or radiation. If chemo/radiation can shrink the tumor you might even be a candidate for surgery in the future. Has anyone given you an estimate of the size of the tumor (based on the CT)? Do you know if it has spread beyond the original site? When you see the Onc. you need to consider how positive he is and how aggressively he recommends treating you. Even in a worst case scenario where there is little that can be done for you, you need an Onc. who is willing to try very hard. Most likely, however, your situation isn't that advanced.A second opinion is never a bad idea! And, if you don't feel comfortable with the Onc., look for another one.

Be sure to let us know how your Onc. visit goes.

Muriel

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Welcome; I'm sorry that you have to be here. You will certainly get lots of info. and support here. Hang in there--the beginning can be shocking and scary, but eventually you will regain your composure and be ready to fight!!

Maryea

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Welcome -- I am glad you found us. My husband was told he was inoperable upon diagnosis but he was told that could change if the tumor shrunk during radiation and chemo so that it could be removed. You will find if you read through profiles that most likely you will start with chemo and radiation. Once you get your treatment plan then you can get a second opinion to see if you're missing anything. You should also get a surgical opinion if you feel there is any chance surgery is in your future.

Hang in there-- I know the beginning is devastating-

Rochelle

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Definitely get a second opinion! My primary doctor told me that I could not have surgery because the cancer had spread to my lymph nodes. I got a second opinion from the surgeon. After radiation and chemo I had surgery and have had clean scans since. That was in July, 2005.

Carol

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Hello and welcome. The beginning of this journey is really , really rough! Believe me I have been there!

I too had chemo and daily radiation to shrink my tumor that was touching nerves and blood vessels and the pluera ( lining of the lung). When I finally had surgery the tumor was all dead scar tissue. The original plan was for more chemo after surgery and I did have that too. My journey started 12/3/97 !! My last CT still showed I am cancer free. Keep us posted on what your plan will be and how you are doing

DonnaG

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Welcome to the LCSC! There's a great deal to learn at first, but as you become more familiar with the medical jargon the picture tends to clear and it will become easier for you to know what you're dealing with. The best reference I've found on NSCLC staging is here...

http://www.emedicine.com/radio/topic807 ... nm_staging

...and every time I go back to it I understand something new that went over my head the previous time. From what you wrote, I would guess that you're IIIA due to involvement of the mediastinal lymph nodes (mediastinal meaning towards the center of the chest). This may be operable at some point, for example after a course of chemo and/or radiation, and it's even potentially curable. Mine is IIIB for a couple of reasons, and generally considered inoperable and incurable, but even those two words are not as foreboding as they would seem at first glance. Here's something I wrote 16 months ago upon diagnosis, and I still feel the same way today:

http://lchelp.org/l_community/viewtopic ... highlight=

It's very encouraging that your scans don't show any suspicious activity outside of your chest. If you haven't already, you might be getting an MRI of the brain to check for any lesions there, as the brain is a favorite site for adenocarcimona mets. Usually those can be effectively handled with radiation.

Let us know what the onc says, and if you're given any sort of statistics in terms of months or years, take them with a big grain of salt. They are based on historical averages/medians of a large number of people who received a similar diagnosis in the past, and are not directly applicable to any one individual. I never asked, and the "information" was never forced upon me. Best wishes and Aloha,

Ned

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Welcome!

Two years ago this very month I was in your shoes, not feeling well and spending time at the docs trying to figure it out. It took a few months, but in the end it was adenocarcinoma, stage IIIb/IV. I know it feels a bit like an out of body experience right now, but I assure you that as you get more information, the feeling does go away.

I would definitely recommend getting a second opinion, without it you will always wonder if you could have done something differently.

It has been almost two years since my diagnosis and I am doing really well. There are many people who are living with this disease, as you will see.

Please keep us posted on your progress and come here any time you need information, or just a pep talk.

Good luck.

Tracy

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Hey there.

I am at Stage IIIB and have been through chemo and radiation. I am kicking myself for not pursuing surgery earlier. And although an oncologist will discuss surgery with you, think one also needs to discuss directly with a surgeon. They sometimes operate as a team and discuss cases together. I am going to push for that now. After reading lots of good info here, I am now feeling a bit better about not pursuing surgery earlier, as it does seem that more potential after chemo and radiation. But please ask for chemo if it is not offered. I think you have had to have both from what I have read.

I was SOOO scared before I went to the clinic and talked to oncologists about my treatment plan. I felt much better after talking with them....knowing there was a plan and next steps. I took a deep breath after that.

It's alot of ups and downs for sure...and you can't be positive all of the time. Just take it one day at a time.

Best wishes

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Dear Manifest-

Welcome to the forum. Sorry you had to find yourself here but as I am sure you have already noticed from all the posts, the people here are the best!!

I know how you feel right now, we all did in the beginning. Kinda have that deer caught in the headlights look, huh? Believe me, that will get better with time, especially once you have a treatment plan in place. Right now your head is spinning with all the "what ifs". So please take some time to think in advance what questions you have for your doctor, write them down, and then write down his answers. And don't ever feel funny about calling him once you have more questions. If he doesn't have that kind of time for you, then he's not the doc for you.

Oh, and don't listen to any "timelines" anyone gives you. Many of us aren't supposed to be here right now, but we are. Everyone is different and timelines are based on statistics. And most of all, stay positive and NEVER GIVE UP!!

Please keep us posted and don't ever hesitate to ask any question whatsoever!!

Hugs - Patti B

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Welcome Manifest

They're throwing a lot of stuff at you right now along with new terminolgy and you are going to find that you're learning everything you never wanted to know about lung cancer.

The good news is that Stage 3 is treatable and it is possible, depending on the location of the tumor, that surgery may be an option for you in the future.

It is important that you have an aggressive medical team that will fight for you and we always recommend 2nd opinions here and sometimes a third.

Take comfort in knowing that we've all been where you are right now, but once a treatment plan is in place you will start to feel more optimistic and less anxious.

Don't hesitate to post any questions, anything at all.

Good Luck & God Bless

wendyr

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There are many people who are living with this disease, as you will see.

This is one of many comments that struck me and I completely agree. You don't die from Cancer, You treat it and then you live wiht it and then it is beaten at that point I think. Thats just my personal thought. The fighting spirit is the most important part of the whole process.

A Prognosis is just a statistic THATS ALL, Nothing more. almost everyone here has outlived theirt initial Prognosis I think.

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Manifest

You'll find many brave and strong individuals on this site. As yourself, I was very depressed when I found out I had cancer but soon realized that a positive attitude coupled with my medical treatments can prove to be a very strong combination. Welcome to the fight.

Lenny

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Manifest~

I am yet another of the many IIIB'ers, "inoperable" and living fine :lol: . This site got me there. Do get yourself a binder/ calander, to help time line your events. Ask always for copies of your tests, it's impossible sometimes to absorb test results at the inital information. Comparing my scan from 6/07 and then in 1/08, gave me strength.

We are all here always and because of the time zones, someone is pretty much always on line.

Please keep us posted. Sending you and your family and friends tons of positive energy!

Mary

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Well, read my profile below. I too am a IIIB and I've been cancer free for 12-1/2 years! :wink:

Sounds to me like you need to tell your doc's that they are in need of an ATTITUDE AJUSTMENT!!! Maybe you need to share our stories with the doc's! :roll::wink:

Sadly enough there are a LOT of doc's that give up on us and that's when you need to find a new doc!

Good luck and keep us posted.

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Thank you so much for the information and the energizing attitudes. It is much appreciated.

I went to the oncologist today and he pretty much confirmed our path. He sent me to a surgeon and I have an appointment with a radiation oncologist tomorrow.

Our thoughts are that we start an induction path such that if we get some shrinkage we can go ahead with the surgery. He plans to begin chemo next Wednesday with both Taxol and Carbo. With the radiation treatments beginning as soon as possible.

The surgeon agreed that we should wait and see if we can get the tumor to a more operable state before comitting to a surgical procedure.

I am still unsure as to the length of treatment and some of the details but I hope they clear up soon.

I did get the oncologist to make me an appointment at Duke Medical Center for my second opinion on 2/19, but I consented to going ahead and starting the chemo and radiation in the meantime.

Again, thanks for the support!

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Welcome to a wonderful place Manifest. It sounds like you are going to be receiving the same treatment plan I had. I had 6 weeks of carbo/taxol along with 37 radiation treatments. I do remember being very tired by the end of the 6 weeks but I experienced no other bad side effects during that treatment period. Keep a good attitude, eat well and drink lots and lots and LOTS of water to stay hydrated.

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Welcome Manifest

I am 47 myself. I was 42 when diagnosed (stage 3A)....I am coming up on 5 years of survival. Even though I have had my up's and downs. My quality of life has been very good. I worked up until just 8 weeks ago, when i decided to take it down a notch and go on private disability insurance...in order to focus primarily on my health and my family. I have traveled alot and even have run 2 10k races.

Try not to dispair there are plenty of great success stories here.

A great book is Greg Anderson's "50 essential things to do if you have Cancer"

He is a 25+ year survivor of stage 4 Non-Small Cell Lung Cancer.

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