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Early Stagers ROLL CALL!!!!


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I remember when I had my surgery - even though the doctor said I had an 80% chance of making it to 5 years, I didn't believe him. The survivors on here really gave me hope -

So I thought I would take a roll call of early stagers ---- I know that some of you just visit on occasion so I'll just sit and wait.... :-) Come on in and tell us what you've been up to!

Early Stage lurkers --- please come out and say hi too.... :-)

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Hi Debi.Early satger here also2b. I remember all I thought about was dying the first 2 years. The only one who ever gave me any hope was my surgeon. My onco and pulmonolgist didnt seem to want to get my hopes up to high.Maybe for good reason. I came here a number of times but would click off whenever I read some of the sad outcomes. It was only when I stayed awhile and read some of the profiles that I began to have hope. Im still leary of getting my hopes up to high for fear it might return and then my fall would be greater. I try to live each day now and enjoy it.

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Hi Debi!

It's good to see you on the boards again! I'm mostly a lurker these days, and my 6th year of survival has brought me to a point where I'm not thinking about all of this non-stop. 8)

In my days of diagnosis and wondering just how bad this was all going to turn out, I stumbled on this site and it was the only thing that gave me any hope for a future. I saw long term survivors posting on this site, and I looked to their stories as proof that I could survive this disease, when no one else, including my health care providers, was overly enthusiastic about my chances for survival.

Of course, every year in May, when it's time to go see my surgeon and get the CT or xray or whatever, I go into anxiety mode. It's not nearly as intense as it used to be, but I still get it, no question. And, of course, any time I don't feel well, the crazy things start running around in my mind. :roll:

I know you know all this Debi, my "sister", but I'm just puttin' it out there for others to read. By the way, you look fantastic! Are you going to tell me how you lost all those pounds? I could use some tips right now!

Cindy

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December will make 2 years of survival for me. I'm way too busy, working 45 hours a week and riding my bicycle 130 miles a week, although I'm hoping to do something about that work time before long.

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I celebrated my 6 years as a survivor at the end of June. I did have another primary tumor in the ULL and had surgery & chemo again. In November it will be 5 years since that "incident." Both tumors was staged at Ib. I've been very fortunate.

I do have a CT scheduled for this afternoon, with an Onc. appt. tomorrow. Xanax has helped a lot the last couple days :lol: I don't have any reason to think there is anything wrong, but I still worry.

Muriel

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Muriel, will be thinking of you tomorrow and sending positive energy your way. I'm sure the results will be good but be sure to post the update. Are they making you wait an extra day at MDACC for the results now? They did me last time. Said same day reports were putting too much stress on radiology. Of course they were cramming in blood work, scans, infusion and clinical visits in one day. It was too hectic for us also.

Again, good luck to you.

Judy in Key West

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I am 6 1/2 years out from my cancer now. My oncologist told me last year as far as he was concerned I was cured. I am having other issues right now but my remaing lung is still clear. I don't post much now because I feel with all the necombers her, that my treatment info is probably outdated.

I have done some things I never did before my dx. My number one goal was to see the ocean. I had never saw it till this summer. I am making plans to see it again. Everyone here is in my thoughts and prayers.

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Hey Debi! I am 3+ years since surgery and like you told me repeatedly - it does get better as far as the anxiety and constant waiting for the other shoe to drop. I still manage to get myself pretty worked up at my annual scan time, but even that seems to be improving as time passes.

I remember so clearly thinking once I heard those words "you have lung cancer" that I best start preparing and planning for the worst. At that moment I never thought I would be here today fully participating in life and making plans for the future.

I started working last year (in a totally different field - I was a medical secretary many years ago and now I am a bank teller!); we bought a big trailer that we enjoyed camping with every weekend this summer; and I have watched my kids grow in inches and attitude (teens!).

There is definitely life after cancer. Thank you for being my beacon Debi - you guided me through the most miserable moments and by requesting our stories you are helping many others new to this journey. BTW, you look awesome girl!

Linda

P.S. Muriel - good luck with your upcoming scan-can't wait to read your update in the Good News section!

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I guess technically I'm an almost 2 month survivor if they count from the surgery. I had my 1st surgery in June and my second in August and was staged 1A in both cases so no further therapy was requested. I am still however recovering from the surgery - the nerves are not happy yet on my left side so I am still hurting. I don't know how long it will be before I "believe" my oncologist who said "This just doesn't happen - we don't get lucky like this - two stage 1 tumors - come back in December for your first scan." So now I live with a cramp in my toe being toe cancer, a stress headache at work being brain cancer and even hip cancer when my behind gets to hurting. Maybe in December I'll get lucky and start feeling better between scans.

I love reading everyone's story of STRENGTH - I know I have gotten a ton from everyone here. It may be hard to believe but I even think the bad news things are important - including the crying that goes with it. I know a good cry always makes thinks look more manageable.

There have got to be a lot more early stagers out there - I wonder how long it really takes for the pain to go away from VATS. I wonder which doctor I should go to to get that scanxiety prescription for xanax. I wonder which doctor I should go to for a lot of things. Guess I'm still too new at this to be a early stager....

Annette

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Annette - you sound exactly like an early stager - forget about being too new to be one!! I can't tell you how much I identify with what you said about your various pains and them being of course, cancer mets- I am like that to this day, only not as frequently. I currently have a nasty sore throat and am convinced, yes- you got it, its throat cancer. Chloesmom and I had countless PMs in the beginning with me asking 'what's an adrenaline gland?" and her replying "i've already searched it". Everything I read about, I worried I had. I couldn't believe that I might be one of the survivors- my life isn't that lucky!

Bruce - so glad you finally made that right out of your driveway and made it to the beach!! :P:D And Linda, can I tell you how GOOD you sound??? You have MADE it girlfriend - you are on the other side of the fear- good for you!!! And Cindi - good to see you my friend -

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Don't know if I'm a late early-stager or an early late-stager, but I'm here, six years out. SIX!

Life has turned upside down for me lately, with all the stuff that happens on the journey. Maybe an update later, but for now, I'm still here...

Becky

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Hi All,

Almost 2 1/2 years for me. They have scanned me every 3 months since my surgery as there was always something suspicious or that had grown. I was put on prednisone last April and my June scan showed everything of concern almost gone. This was the first time since my diagnosis that they finally said NED.

Now they say I have sarcoid or silicosis. Unfortunately a PET Scan a few weeks ago showed that 6 weeks after the prednisone taper, the inflammation is all back. Back on prednisone and another scan in mid December.

Feel very blessed that I am NED for cancer, but this inflammation thing and prednisone is wearing me out. Hope this round works for good!!!

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I just celebrated my 2 year anniversary since my lobectomy. Staged 1b and I followed up the surgery with 4 rounds of adjuvant chemo. I wanted to wait until after I got my results today to post here. Didn't want to jinx anything. Annette and Debi I can also relate to all those ache and pain phantom mets. I can certainly remember a toe cancer I was sure I had. My mother and Brother both passed away from cancer. For me, if I get a pain in my big toe, I'm sure one of them had a pain in their big toe before they passed away. Not sure if those thoughts will ever go away.... but I sure hope so. I certainly enjoy every day more now than I had before.

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Annette,

I actually had been trying to lose some weight, with no success, and then all of a sudden one day, the scale went down 3 pounds.

Instead of celebrating and realizing that sometimes results of dieting are like that, I immediately went to the cancer thoughts (you know, sudden weight loss), and had to prove to myself that the weight loss wasn't brought on by cancer.

How did I do this? By eating everything in sight (while worrying myself crazy) until I gained back that 3 pounds!

That is how goofy and paranoid I am, and yes, it's getting better, but it's still there. For a while this summer I was totally focused on a spot (translation: freckle :roll:) on my ankle that I was certain was not ever there before.

I'm lucky that the physical part of this experience has not been all that painful except for that sudden catch under my rib cage that takes my breath away sometimes (do you still get that too Debi?).

It's the emotional aspect that has really taken it's toll on me. And, as time goes on, I am better about that, but sometimes the fear and anxiety just take hold and it's so difficult to conquer.

But, the most important thing is, 6+ years later, I'm here! And healthy! And very grateful.

Cindy

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Does limited small cell count as 'early stage'?

What the hell, I'm jumping on this band wagon as a long time survivor, November 2001 seems a long time ago, a heartbeat in one way a lifetime in another.

Breast cancer more recent but still 2 1/2 years since dx, and NED for that one too.

I'm an early stager for both - thanks to luck the first time and my bathroom mirror the second time.

I'm also paranoid about "symptoms" that appear from nowhere and disappear the same way :shock::shock:

Geri

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Geri - you can jump on any bandwagon you want!!!! :-)

Cindy - YES! I still get that thingy under my ribcage but haven't for awhile now - months actually - and I even go to the gym.

I had to laugh about the weight loss - I did the same thing, I told the story at work! I lost 6 pounds and felt cold terror - went and got thick shakes, fettucini alfredo, anything to put the weight back on because i was convinced it was the cancer back. Meanwhile - I was on a diet!!! I did that about 3 times before I psychologically processed that it was okay.

So now I am down to 70 pounds lost since last November. In answer to your earlier question Cindy, in simple form, I just stopped eating like I had been. Also, I work out 3/4 times a week with weights and cardio- in the first 6 weeks I lost 1 3/4" off my upper arms! I still have a way to go, but at least I'm going.

Cancer did many things to all of us - to me it brought fear into my life and crippled me for longer than it should have. Coming here to the board brought me much needed support, but it also brought alot of pain and loss. I retreated inside myself, and with my job transfer, no family around, no friends - it was easy to just work and come home and watch TV. I thought I was okay, but I really wasn't. Last year, my pause button finally went off, and I started getting involved with people again, and with life. I come here when I can, sometimes more than other times, and try to balance what I feel is my obligation to lung cancer and my obligation toward myself and my son and living a close to normal life that for some reason, I am fortunate enough to now have. I guess I do what I can and then take a break when I need to.

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I know what you mean, Debi. Between my family, job, and riding, I had plenty to do, and my first inclination was to throw myself into everything and just try to forget that it ever happened.

But after the trauma of open lung surgery, sitting in chemo rooms with other cancer patients, and interacting online with others who are later lost or lose loved ones, it's easier said than done. I think getting involved, trying to help and give support is therapeutic for the soul.

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My mom IIIA, advanced, but she is still in remission since her Nov2003 diagnosis.....despite brain anyerum procedures & triple bypass along the way!

My dad unstaged (either I or IV, depends if the blip in the brain is malignant, at this point they asume probably not) diagnosed Sept 2007 is also still in remission!!!!

We all count our blessings daily!

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  • 4 weeks later...
  • 1 month later...

I'm still here too! 4 1/2 years, stage 1A

I don't get on the board as much as I used to, life has just been too busy, and FB seems to have taken up my spare time! :)

This was a great post Debi...it's so good to see so many of the "old" early stagers posting, like myself. We are all so lucky, I still thank God everyday!

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Three years and 9 months since removal of my ULL for stage 1b lung cancer. Last CT scan was 12/03/09 and still NED!! And yes, I did get nervous as the time for the scan drew closer (but notably less than in the past :) I still lurk here every now and then and occasionally post but life has gotten busy again (that is a good thing!). If any of you remember, I started running after I had cancer - and I am still running today!

(http://www.lungevity.org/l_community/viewtopic.php?t=33970)

I find myself being more of an advocate for lung cancer research now than in the past. When I run in various races (and on runs around the city), I now wear a t-shirt that proclaims my lung cancer survivor status. I hope it shows people that with early detection and proper treatment, lung cancer is not a death sentence and, within limits, we can live as normal a life as many others. It is rather interesting to see peoples response to the shirt. Some look away from you when you look at them, others just ignore it and some will acknowledge you with a nod or thumbs up. Most simply do not know how to react. I hope by wearing the shirt it at least makes people think more about lung cancer and the need to address the issues it presents.

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Hi Debi...

Pam/nonni here....5+ years since surgery..the old fashion way..URL removed ..staged at 1A with no furthur treatments......Debi can actually tell my story...I was really paranoid....getting better now thou..still can't get a freaking headache without thinking the C word...

Good to see you here girl...I think of you often and hope you and your son are doing well....happy to hear you got on with your life...hope it'a fruitful one with much joy and happiness..

Had a couple of scares in my journey but all turned out OK...Thank You Jesus..having Ct's and blood work yearly now...due for a Ct in April....still get scaniety thou...don't think that will ever stop....NED is my friend and pray he stay's that way....Like Jan...I thank God every day....

hugs to all and wishing a HEALTHY HAPPY NEW YEAR TO ALL MY FRIENDS HERE

nonni

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