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New to the Community and So Sad Tonight


Leslie

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Hello--

I've been lurking on this website for the past few days--inspired by all--but desperately hoping that I wouldn't have to join.

Tonight my dad was diagnosed with Stage IIIb Adenocarcinoma. It is in three lobes. An earlier CAT scan indicated that it had not spread...but he is having a PET scan on Monday to determine that more definitively.

I am so scared. I've looked at the prognosis rates and its not good. Can someone please provide me with some perspective? My dad is 67. He hasn't smoked in 33 years. He exercises regularly and eats healthfully.

Thank you for your compassion.

Leslie

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Hi Leslie ... sorry about your dad, but this board is such a comfort and source of information and support. I went through this exactly one year ago with my mom, but guess what? She and I went shopping and out to lunch today ... last year at this time, I doubted she'd still be here. She is doing well right now and actually has never felt all that bad in the last year except for a couple weeks following her surgery (which, as you can see below, she wasn't even an candidate for originally).

She was also Staged IIIB, Adenocarcinoma. So don't get discouraged; I believe the information you find on the internet about survival rates, etc., for this type and stage of cancer are thank GOD a little skewed and out of date. As someone on this board pointed out to me, those statistics aren't including those people diagnosed and treated in the last couple of years. I'm hoping people like my mom and others on this board are going to change those numbers drastically in the months and years to come.

Hang in there ... there are great people here to count on.

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Hi Leslie,

I know the news is devestating....but hang onto HOPE. We have survivors here who can help answer your questions,share their experiences with you and show you that there IS life after a LC diagnosis.

Please read the MY Story forum for some hope-filled stories. Your dad CAN beat this.

Keep us updated and keep posting, it really does help.

Welcome.

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Leslie,

Welcome to our family. One thing for you to keep in mind is that every case of lung cancer is different, so you can't compare your Dad to others. What you will notice is certain similarities in cases . I know it's hard waiting , but your Dad's doctor should be able to give you a better idea of how he will be treated after he gets the results of his PET scan. Just know that there is a lot of reason to have hope and plenty of supportive members who will be happy to share information with you. In the meantime, read everything and you will learn that there is a wealth of information here . My best to you. Keep us informed of your Dad's case.

Sue

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Hi Leslie and Welcome. I was diagnosed Stage IIIB adeno in August '05. I feel great today and, except for lots more doctor appointments and tests, my life is all that different than it was before diagnosis. Except I appreciate it a heckuva lot more.

Good luck to you and your dad. Hope his treatment goes well. Feel free to PM me with any questions.

Trish

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Welcome Leslie-

My husband is also Stage IIIB NSCLC witih vena cava syndrome. At the time of his diagnosis he was given a very grime prognosis due to the tumor being on his vena cava (the blood vessel to the heart). He is still here and doing pretty well almost 5 years later. Let us know what the treatment plan will be when you get more information.

Rochelle

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Hi Leslie: Welcome to the best support on the web. This 'family' will give advice & support when you need it. My husband was diagnosed one year ago with 3A NSCLC Adeno & given a grim prognosis (see profile) We never expected he would still be here today but he's still here. Next week he gets another CT & has a firm treatment plan in place. The best advice I can give you is to get to a major comprehensive cancer center where your Dad will get the best & most up to date treatment. We firmly believe in second opinions, and third opinions if we think it's necessary. Good Luck & God Bless

wendyr

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Thank you all for your warm welcome and encouragement. I'm Leslie's younger brother. Independently of my sister, I came across this site when we were just in the possibility stage and knew it was going to be an important place for us if the diagnosis came back as it did.

tentatively the treatment plan is Taxol/Carboplaxin and Avastin---three week cycle, I think. The main tumor is at T3 and 4 to 4.5 cm with many smaller nodules. Cells are "moderately differentiated." The tentative plan is to have him start on Friday. However, he also has a brain MRI and a PET/CT coming before that (first ct came up clean at other sites but the pattern and extent of lung nodulation has suggested metastasis all along---nevertheless, doctor believes its a lung primary).

This whole thing has such an air of unreality to it. I keep on wanting to believe he's been misdiagnosed and has sarcoids (his first cousin has it in her lungs + he has lots of symptoms)...doctor dismissed it saying that sarcoids has a

"classic pattern."

I know, I know...its time to get real and start moving forward.

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Hi, Leslie and Adrian -- a big welcome to the LCSC!

Let's see if I can give you some perspective. I'm four years older than your dad, quit smoking 43 years ago (compared to your dad's 33), healthy lifestyle including regular exercise. Pretty even so far.

I was diagnosed IIIB NSCLC (maybe IV depending who is asked), same cell type (adenocarcinoma, one of the more common, better studied, more treatable types). I had two separate nodules in the right middle lobe, one of which was resected during an exploratory thoracotomy (not actually for curative purposes, but if some was to be taken for biopsy, it made sense to try to take it all if possible). There was also direct invasion into the chest wall, mets in the parietal (outer) pleura, and a real mess (pleural effusion/hydropneumothorax, loculated fluid, not responsive to pleurodesis) in the lower half to two-thirds of the right lung. You dad has nodules in three lobes (I gather from your writeup that these are in the same lung, which must mean it's the right lung, since most people have only two lobes on the left slde because of the heart). You don't mention a pleural effusion or cancer cells in the pleural fluid, so I'm assuming and hoping there is none. I'm not sure who's ahead now, but I have a feeling it's not me.

Mets to the brain, bone, other organs? Your dad hasn't had all his tests yet; mine were negative, but that was back in September. So I'll mark down "unknown, probably not" for both of us.

Planned treatment? Appears to be identical to mine (see my profile below). The taxol/carboplatin/avastin combo is quite common for adenocarcinoma -- my onc says it's one of his favorite treatments and he's had a number of patients do very well on it. It's proved beneficial for me, and now that I'm on the avastin-only part of the program with essentially no side effects, I'm feeling really good again. I'm also encouraged by the fact that if and when the avastin stops working (as it most likely will at some point) there are other approved drugs such as alimta and tarceva that I can move to, and even better treatments are in the pipeline. My expectation is that I can keep this thing beat back and have a good life until I'm old enough to die of something else. Your dad can do just as well and probably better -- he doesn't have a major surgery to recover from before starting chemo, and as I read your post he hasn't lost a large part of his lung function as I had (and most of my loss is probably unrecoverable).

I sincerely hope my general tone hasn't seemed cavalier. It's certainly not my intent to minimize the seriousness of your dad's condition or the shock you're all adjusting to right now. Keeping things a bit on the light side helps me to maintain a positive attitude and not obsess over cancer or some other problem in my life. If I took a turn for the worse I'd probably still talk the same way. You'll hear lots from this community about positive attitude and expectations, and it's true, regardless of one's religious, spiritual, metaphysical, or other beliefs. My very best wishes and Aloha,

Ned

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thanks all for your replies, we'll get my dad to join soon, you guys will like him as he's an incredible person!

Ned, far from being cavalier, you'll see that our approach since this began (all of two weeks ago) is to be as light about it as possible---so we certainly don't mind your lung versus lung matchup (as long as my team is winning :twisted: ). Our family has always been one that loves to laugh and joke---and it would be a terrible blow if we were to lose that now.

My dad has already emphasized to us that the last thing he wants his life to become is a never ending Yom Kipur service (for all you non-Jews that's a pretty somber affair).

As for the standard treatment---anybody have an opinion on the value of a second one (opinion) before jumping into his first round of chemo? I know we would certainly want to wait until after the PET/CT as that will give us a clearer picture as to whether this is actually primary lung c. or not.

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Leslie and Adrain,

First, let me say how sorry I am to hear of your father's diagnosis. It is so scary--especially in the beginning and especially when you first hit the web and start reading about the prognosis. Then you find this site and it is upbeat, and hopeful with many stories of long term survivors and you feel like you've found shelter in a storm. My mom was diagnosed with Stage IV NSCLC in January and I've been where you are now.

A second opinion is never a bad thing. The chemo your Onc. is recommending is a standard first line treatment. It is the regimine my mother is on. She has had three rounds so far and will have her fourth on Wednesday. The side effect haven't been too bad. She lost all her hair pretty quickly from the Taxol, but hasn't had any nausea. She gets tired and sore for 3-4 days after a treatment, but then starts the upswing. She hates the Neulasta shots worse than the actual chemo.

I was able to go home for a visit between her second and third threatments and was surprised at how good she looked and how much energy she has.

I look forward to meeting your Dad, but in the meantime, I'm glad you found us.

Susan

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A second round of thanks from Adrian and I. You can't imagine how comforting it is to have found this site and to have found so many knowledgable guides in this very unfamiliar land.

PET scan Monday, MRI Tuesday. Please keep us in your thoughts. We love our dad so much.

Leslie

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Welcome!!

You have tremndous advice here, you'll always get it on this board. Cheers to NED, he's on the money. Your dad's time with you isnt over because of the diagnosis, never forget that!!

As for the second opinion, I personally believe in them, word of caution though. If you do seek the second be sure the Onc's are not affiliated. We took a second from a doc with in the same system. All he did was ask us what the first Onc had said and mimicked it, didnt want to cross his co-worker.

Your journey will be like a rollercoaster, with ups and downs. Remember that when you feel down, that doesnt mean your out!!!

Beat it!!

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So sorry you had to find this place, but there is no better place for support

I know it is devastating when you first hear of the diagnosis, but then you regroup and concentrate of him getting better.

We have many survivors on here that have been diagnosed with stage 3B and even stage 4

I am hoping all of his other tests turn out negative

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again, thanks all.

dad had PET/CT today. we'll get the results tomorrow. here's to hoping that only the lungs are at issue---as his first CT initially suggested.

It also looks like we are going to get a second opinion (from a reputable onc. who was recommended by two independent sources). I think we have good reason to as we've gotten some mixed info. For instance, dad's ct and xray shows nodulation on both lungs, but the onc. said based on the ct (and corresponding report from ct guy who he described as phenomenal) he believes the cancer is only in the right lung (which, I suppose, is why he suggested IIIB staging). This seems second opinion worthy in and of itself.

Of course, this could be moot after tomorrows PET/CT results.

on a side note, I've noticed that since this started I'm hyper aware of this balancing act where I'm trying to be strong, but trying to avoid that strength from morphing into a subtle form of denial. so million dollar question: what is it to be authentically strong in the face of this?

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Hi Adrian: As far as the balancing act goes, just be yourself. Don't try to be superman and always acknowledge your feelings of sorrow, frustration & grief. Suppressing those feelings just makes it tougher later. Good Luck & God Bless

wendyr

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Oh Leslie,

I am so sorry about your dad's diagnosis. You have come to a wonderful place. Please know we are praying for you. My dad's cancer is different, but I know there are people who can help you.

Blessings,

Jen

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[ Adrian ]...I'm trying to be strong, but trying to avoid that strength from morphing into a subtle form of denial...what is it to be authentically strong in the face of this?

Good question, one which I don't recall seeing before. But I'll still make a stab at an answer!

This gets into semantics, but to me "denial" is when someone refuses to recognize that a problem exists, or to recognize that an existing problem is a serious one. I don't think there's any danger of you falling into that trap. To be strong is to face a problem head-on, acknowledging the difficulties ahead, but confident that you and your team have the wherewithal to win. If you get behind, redouble your efforts and regain the momentum. There are obvious parallels with a well coached athletic team that gets some bad breaks for a while but never gives up and eventually becomes the victor.

Here's a little mental technique that I find helps me, or at least I think it does. I don't know how valid or accurate it is biologically, and if I'm found wrong I'll replace it with something else, but here it is: Cancer is not something foreign that's invaded my body. It's not like a flu bug or snake bite. It's some of my own cells which, for one reason or another, stopped behaving according to the rules and, for one reason or another, were not adequately curtailed by the body's natural defenses. We need to eliminate those wayward cells (which should have died a natural death anyway before now), then strengthen the body's defense mechanisms to better deal with that sort of thing in the future.

Hoping the CT/PET results give you more clarity about what you're facing and the best course of treatment. Aloha,

Ned

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