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wpoohn

diagnosed today

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I just got the definate diagnosis of nsclc today after three months of tests and being on a roller coaster of emotions.

The oncologist is calling it stage 1 and says we caught it early--but-- my mass is pretty big--3.8x5cm, in the lower right lobe.

I am scheduled to go to the Cleveland Clinic to talk to a surgeon on Tuesday---and to have ressection done asap. I've already had my pft and am operable, and have had a ct/pet done with no sign of any lymph node involvement so far.

They have found that I also have papillary thyroid cancer---but that is supposed to be more treatable and is to be tackled later.

Needless to say---I am a mess---trying to be positive---but still dealing with a partially collapsed lung from my ct biopsy Tuesday---and also impatient to fight this before I get sick or start to weaken.

I don't know anyone who has a clue about what this is like.

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Welcome. Sorry you have to be here, but I am glad you found this sight. I wish I had known about it when I got dx'd. They caught your's early that is fabulous news :!: But I know what a shock it is to hear the words, I think I'm still a little shell shocked about the whole thing. :shock: Read some of the stories here and you will feel better, "CANCER" does NOT equal death :!: You will love all the people here. Just take it one day at a time you will make it through. :D

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Welcome, wpoohn! You'll find lots of support and some great people here. I am another who was diagnosed early, and have remained cancer free for a year now, after my surgery.

It's a terrible disease to have, but being diagnosed early is the best thing that can happen with it. Best of luck, and keep us updated.

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Hello and Welcome,

I am a 5 year survivor of adenocarcinoma and I can remember when I was 1st diagnosed officially, like it was yesterday. I never thought I would be able to mentally deal with the cancer diagnosis, non the less have the courage to face the upcoming physical challenges it brought.

Flash forward 5 years and I have had a lung removed, a paralyzed vocal cord, 6 different chemo/tumor drugs, radiation to my chest, spine, pelvis and skull. I am still here and enjoying life!

I found alot of hope from this site by reading other survivor stories and I encourage you to read the stories in the My story section. I would also recommend that you don't read all the statistics on lung cancer, they are very outdated.

Good luck as you begin your journey and keep us posted on your treatment.

You can be a survivor too!!

Wendy

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Lots of us here do have a clue as to what this is like and, I'm sure, you will hear from many of us. The start of my story is somewhat like yours and I'm a 5 and a half year survivor. My first tumor was in my URL. I had surgery in June 2003 and then 4 cycles of chemo. I was staged at 1B. 18 months later another tumor was found in the ULL. Had surgery and chemo again. The pathologist, surgeon, and my first Onc. considered it to be another primary cancer and another 1B. It's been a little more than 4 years since the second surgery and I haven't had a recurrence.

This journey is very scary at the beginning. I found that my anxiety was reduced by searching for and reading as much information as I could find. Be careful about what you read, tho. Look for reputable sites - the major cancer centers, medical schools, etc. are good.

I've been very fortunate, so far. I hope that your luck is as good as mine has been. (Altho. you never know what tomorrow will bring.)

Best wishes,

Muriel

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Welcome to the group! At the beginning there's just too much coming at you to take in all at once, but you'll start to feel more in control before long. Sounds impossible now, but it's true. Keep us updated as you learn more about your situation, and never hesitate to ask plenty of questions. We not only have a clue, we get it and we understand. Aloha,

Ned

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I'm glad you were able to find us so fast, I didn't even start searching for a group until weeks after surgery.

My tumor was between the middle and lower lobe of my right lung, so both lobes were removed. I was re-staged as IIIA after surgery, I had some positive lymph nodes that weren't seen on the scans.

Now, if I told you that I was all calm and collected prior to surgery, I'd be lying. I freaked out the day after my positive biopsy, had a panic attack. Looking back, if I could talk to myself, I wouldn't even waste my breath! :roll:

You're going to panic, you're going to stress out, and it's not going to matter. Whether you are calm or whacked out, you will still be given good drugs, wake up feeling slight pains and then hurting like hell. You'll wonder when it will ease up, and some weeks later, you'll realize that it has. Try not to think about it, it just adds to the stress.

My primary care physician was an angel, she called me when she received the report and told me to come in. I walked out with a prescription for Xanax and Ambien so I could sleep and turn off the monsters in my brain... I would suggest you talk to your doctor about the same, better living through chemistry!

Get your rest and be kind to yourself. It's scary, and you are perfectly normal to be scared - but try not to let it take over your life. If you spend all your time worrying about "what if," you'll truly be wasting your time. Understand, it is what it is.

Best of luck to you, may your stage after surgery be the same as your stage today.

Hang in there!

Becky

PS Stage IIIA and I'm coming up on six years cancer free.

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Hello and welcome to the site, Wpoohn.

You have come to a place of knowledge and support. Many understand this journey very well. There are survivors here, and able to help you.

My husband was not as fortunate to find his lung cancer early. However, he has managed to survive over four years with a combination of chemo regimens, radiation, and has not yet had anything that would put him in what we would describe as a low quality of life.

He is now on the chemo drug, Tarceva, a pill.

What I am trying to say, and not well, is that when he was first diagnosed, and for some time thereafter, my emotions were all over the place. Not with him, though. He had the idea that this "was a job to be accomplished." He certainly has done that.

Once "the plan" was in place, treatments begun, something being done, we settled into a "new normal" life.

With your early diagnosis, you are in a better place, and the fact that you searched out help early is a great big plus in your favor.

Please, let us know how you are doing. Whenever we go to the oncologist's, we make sure we have written down any questions that we need answers. Believe me, it helps a lot.

Also, in the very beginning, our niece, an oncology nurse, came with us. Someone who could listen and be that extra "set of ears." It helps to have any help you can muster.

Barbara

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Welcome aboard. You have already gotten a taste of the wonderful people on this site in the posts so far. I'm a +1yr survivor of IIIb and have been in remission since April. There is all kinds of reason for hope. Becky mentioned a couple of "chemical" props. I think a lot of us relied on Ativan or a derivative at least in the beginning. I also read of a lot of people who have taken antidepressants. Whatever it takes to get through the early weeks/months. Things usually do settle down later.

If you are, like me and many others, driven during the early days to do research and ask questions, do yourself a favor. Stay away from Google and go to Dr West and his colleagues on cancergrace.org. You can ask anything you want and they will usually answer (no charge) within 24 hours. They are legit and knowledgeable and their answers can be trusted.

Good luck, Judy in Key West

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You guys are awesome---thank you so much for your replies and support. I was feeling pretty low and alone when I posted and the response was much more than I expected.

It's comforting to know that someone understands what I am trying to deal with.

I already have a prescription for klonopine---I started having panic attacks almost a year ago that they had blamed on peri-menopause. My doctor says just to let him know when I need more or if it is not enough to handle the stress.

Right now I am still taking vicodan for the collapsed lung and it is keeping me pretty calm.

It was reassuring to hear that I am not alone in finding that the meds help to cope---I was sort of afraid I was creating another problem by trying to numb the feelings and slow the racing mind. But, I was finding that I can't stand myself and just want to be alone unless I can mellow out and calm down.

Thank you all for being here,and for making me feel better about myself and what is happening to me.

Deb

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Hi Deb. welcome to the site. It's great that you found us so fast. You will find this site a great source of info and support. The fact that they found it early and that you are surgical is a plus.

My husband was diagnosed with NSCLC stage IV with lymph node and liver involvement. The tumor was 7cm x 5.5cm and was not a surgical candidate. 1 year and 2 days later he is still here and doing quite well. It was certainly not the death sentence that we though we had been handed.

Keep posting at keep us updated on how you are doing.

Denise

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...the response was much more than I expected.

My thoughts exactly, shortly after I posted my first message one predawn September morning in 2006. Please also check out cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

Aloha,

Ned

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Hi Deb-

Welcome to this forum altho I am sorry you found the need to be here. This site is full or the best people around and you will find much suppprt and inspiration here.

I am Stage 4 but have been battling this beast now for 28 months and intend to be here a lot longer. Don't listen to statistics. Yours was caught early and you have such a good chance of kicking the cancers butt right outa you!!! I know in the beginning its just so overwhelming but once a treatment plan is in place and started you will really feel more in control.

By the way, I also go to the Cleveland Clinic. Who is your onc??? What part of Ohio are you from??

Hugs - Patti B.

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Hi Deb and welcome.I know you are still in shock over your dx but be glad that they found it early and that you can have surgery.I dont know if that shock ever goes completely away but it gets better.When they told me I had lung cancer I automatically thought that it meant my time was short. I had never heard of any of the positive stories how many people live for many years or are actually cured of it. I think I was about a year out of surgery when I first came here and that was when I realized that I might even have a good chance of living thru it. I hope and pray the very best for you thru your treatment.

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Welcome Deb. Most of us have to deal not only with the cancer but with the emotions too! This can be beat. Click below and read My Story for what has happened to me. I am an eleven year survivor and no evidence of disease! It took a lot of work but it was worth it. Keep us posted.

Donna G

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Hi Deb,

I don't have a lot to add other than what the replies to your message have said already. I felt the same feelings you do, and with the help of anti-anxiety medication and a therapist, I did get thru it. You surely believe right now that your life will never be back to normal, but it will, it will just be a new type of normal.

Surgery comes with pain, but they can manage it, and as my surgeon said beforehand, there is no extra credit for pain. Tell us if you're having pain and we will take care of it. Guess what, they did!

The other thing surgery comes with is hope for a cure, and I hope that happens for you.

Cindy

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Hi Deb

Welcome to the site. The people here are awesome and will make you feel right at home. I was staged 1B in April 08, ULL and no chemo. Take each day has it comes and try not to get to far ahead of yourself.

Sarah

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I met my surgeon yesterday---I feel good about this guy.

And he agreed with my oncologist and is also saying 80% chance cancer free with surgery !!!

I go up Tuesday for the day---he wants a nuclear stress test and a ct of my brain---then I talk to the anesthesiologist. If all goes well---my surgery will be the 20th.

He is going to check lymph nodes for mets first --and if all are ok, he will remove the mass and I will be cancer free---no radiation or chemo. BUT if there's any sign of mets he will close and I go back to the Onc to kill the spread first.

So ---I am in better spirits than I have been in quite awhile.

He said I am really unlucky to have two cancers---but very lucky that I am young for this ---and that they are unrelated ---and that the thyroid thing is no big deal---don't worry about it for now.

He also said my mass is about the size of a small plum-- he thinks it is an adenocarcinoma that thankfully is not in the pleura ---it looks contained---my lymph nodes looked good on my pet---and I am an excellent candidate because I'm not sick--- the only symptom is coughing a little blood.

So--unless something shows up I am tentatively staged as 1B NO MO .

It is such a relief to know what I'm up against and to have a plan !!

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Well Deb it sounds like there is a bit of a positive spin on this. I pray that it is surgical and they can get that bugger outta there!! It sounds as if that will be the case.

As far as the thyroid cancer goes. I have 2 friend's that have had thyroid problems. One had hers just go crazy and she was treated with Iodine to kill it off and takes daily synthroid. It has been 14 years since her initial treatment. My other friend had thyroid cancer and had surgery to remove it followed by radiation via a pill form which she stayed in an isolated room for 3 days and then went home. You can't even tell she had surgery. They hid her scar in the natural crease of her neck. You can't even see it. That was 6 years ago and she continues do do very well on daily synthroid. So I tend to agree that at this time it is not as big a deal in the scheme of things.

I say you are very lucky that you are basically healthy going into this and that you have what sounds like a good plan in place.

Keep us posted.

Denise

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Hi Deb,

It's good to see that a plan is in place, and that it looks as though surgery will be a go.

Looking forward to reading more about how you are doing as you go along.

Please keep us updated?

Barbara

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Thanks for the positive thoughts---of course I am trying to be as optomistic as possible.

After thinking about my tests Tuesday,I decided maybe I better not go alone---I sure don't want to be stuck in Cleveland trying to get home during rush hour if for some reason they tell me I can't have my surgery.

I sorta figured I should be realistic--I don't have to do this alone-- and there are those that truly do want to help me through this.

Deb

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HI Deb,

Sorry I'm late in my welcome to you- but welcome! You've gotten some really great advice and it sounds like a solid game plan now.

I sorta figured I should be realistic--I don't have to do this alone-- and there are those that truly do want to help me through this.

You're right! Surround yourself around those that want to help you and don't be afraid to ask for help when you need it. We get it, and we are here for you too.

Please keep us posted and keep posting!

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Just a quick update----surgery is on for Feb 20th!!

All my testing is ok---no brain mets, hearts ok---everything looks good and my surgeon is still pretty optomistic----he will check out the lymph nodes first then proceed if all is well. He says I'll be up walking with my IV pole the next day and out in 4-6 days.

He talked to my oncologist and we will talk afterwards about any possible need for chemo or radiation--he also said I may qualify for a couple clinical trials they have through Cleveland Clinic.

I've been listening to this Guided Imagery cd they gave me that's supposed to help-- and so far it does sorta seem like it puts me in a better place mentally.

Hopefully I am ready for this---I've tried to keep up with everything---but was kind of thankful when a Case Manager contacted me from the insurance company (AdvoCare) and assured me that all is well there, and to call if I need anything or have any questions.

I also got a page all set up at thestatus.com--- a site to keep family and friends updated on your condition.

If any of you can think of any helpful pre-surgery things I an do that would be helpful, it'd be greatly appreciated---right now I'm sorta in a hyper mode getting ready---but I'm sure the fear part will kick in pretty soon.

Deb

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Hi Deb and welcome.

I am so happy that all is a go for your surgery - I had mine on June 20th (I believe the 20th is a very good day!) and am 2 1/2 + years from surgery, no chemo.

I didn't have a great deal of time to prepare for my surgery either; however, I did manage to get some meals made ahead of time. My mom came and stayed with me to help with cleaning/cooking/kids and that was absolutely wonderful. Friends who asked what they could do - I told them ... for example, bring a meal, drive me to a follow up appt (still on painkillers the first week) ... whatever I needed. It was different being in the position of receiving care when I have always been the caregiver; however, I know my family and friends appreciated being involved. They felt like they were making a difference ... and they were.

I also had a BIG camping party (very low key-hamburgers/hot dogs, chips) at our acreage the weekend prior to my surgery - we all laughed and had a great time - it is a memory I still cherish and always will.

Know we are all thinking of you and in your corner every step of the way.

Warm wishes,

Linda

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