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ben

New with stage 4 non small cell lung cancer

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I was told yesterday I had stage 4 lung cancer with little hope of chemo or radiation doing any good. I have elected to go without treatment. Has anyone else elected this route? Could you tell me what to expect?

Thanks

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Ben, Before i forget; Check out our forum, the path less traveled. This would fit your criteria. Just because you are stage 3 or 4 doesn't mean there is no hopefor treatment options. there is a lot going on right now and there is always hope for a successful treatment. I hope that you are not foregoing treatment because of late stage. We have Rich, who with treatment has celebrated 4 years as stage 4 If I am correct in my facts. We also have 10 year survivors here. Read through the good news and LC Survivor forums. Keep us posted and I know there will be lots more posts so stay positive.

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Hi Ben.

I hope you are up for a second or third opinion. Your life is too precious to accept just one opinion. We have many long term survivors who post regularly on this board. It is not easy, but worthwhile for them.

Please don't give up without the best information and solution for your lc.

Cindi o'h

(what part of AR are you? Where did you get your prognosis? Do you have symptoms? What makes you a stage IV ? )

We will all try to help you.

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Welcome Ben,

Receiving a stage 4 dx is nothing short of devastating, for sure. And chossing the Path Less Traveled, as Randy has pointed out, IS always an option. I just want you to be sure you have exhausted your options before going that route IF that is what you choose to do. Stage 4 can be a manageable disease. So please make sure you leave no stone unturned on your quest for info.

Please let us know how you are planning to continue and visit us often.

Kasey

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Hi Ben: welcome to this group. I hope you seek a second opinion too. But if you still decide to not seek treatment, don't hesitate to post here for support.

Don M

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The dignoasis was given to me by the VA hospital in Shreveport. My lungs are pretty well full of cancer, my right lung is 1/3 full of fluid and the cancer cells have spread through my body. The Doctor said with chemo and radiation he could maybe give me an extra month. I think the quality of live outweighs the side effects of chemo and radiation. I'm not really sure what to do as I have not made the final decision yet.

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Welcome Ben--Sorry your here but glad you found us. You have been giving great advise and I do hope you will still seek out more opinions before you make you final decision. Speaking only for myself attitude, how one looks at things and knowledge (research) go a long way in battling this decease. In my own experience I found the more I know/understand and getting extra treatments payed off big time after four years and I'm now in (see my profile) remission. Also read other members profiles for inspiration and guidance. Everyone is different, reacts differently, one never knows until one tries. Just a side note--my doctor thought the same thing that the treatments would be far worse then the cancer itself and as it turned out I have/had very few side effects all things considered and the ones I have are manageable. Not saying it is easy or fun because it is not. Below are some links I hope will help. Stay with us, keep us posted and let us know whatever your decision is. Prayers for the best. Rich

http://www.plwc.org/portal/site/PLWC/me ... mt=default (Questions to Ask the Doctor)

http://www.blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

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Welcome Ben,

I too am sorry you had the need to find us, but I sure am glad we are here for you.

I second, third, and forth the idea of getting a second opinion. And I also wish to add that your doc doesn't sound to willing to put much effort into saving your life. I don't like to hear when doc's do that. I'm not saying he/she is a bad doc, but it can't hurt to get another opinion or two.

Our very own Rich here on the board is a Four Year survivor of Stage IV and I know of other Stage IV LC survivors that are still here living a normal life after 2, 3, 4, 5, and yes, 6 years after being dx.d.

I hope you'll take a minute to rethink your options and maybe consider a second opinion.

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Welcome ben,

All I can say is to please take the advice that has been given regarding at least one other opinion and never give up hope.

When my father was diagnosed we could not give him treatment, but he was too weak from a stroke he had a year earlier and would not have survived even one round of chemo. Our whole family knew this to be true. His case was the exception to the rule

Please think again about your options and do a lot of reading here to see the wonderful success stories of stage 4 survivors.

Good luck in your decision and please keep us posted

Kathy

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Hi Ben, I'm so sorry that you were given this news and in a way that seemed to preclude any hope. Was this a surgeon by chance that told you this? My Dad, also stage IV, was told the very same thing by the thoracic surgeon who diagnosed his cancer. Mr. Doom and Gloom, I call him, and thank God we didn't let his words dissuade us from seeking treatment. My Dad finished 8 rounds of chemo about a month ago. All in all, I would say he tolerated the treatments very well and it wasn't until the last 2 treatments that it took him more than a couple of days to bounce back to feeling more or less normal. He has been in a *recovery from chemo mode* the last month but he's picking up again in the last few days, looking forward to the summer, and we've just built him a workshop where he can go out and "fiddle" around, as he calls it, making birdhouses or whatever strikes his fancy.

I hope that as you continue to read through this forum you will find that there is HOPE, for you, for all of us and that there isn't any Doctor or anyone else in this world that can predict how long any one of us will remain here on this earth.

Best to you,

Lynda

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Welcome. I also have to say get the second opinion. Please get all the information before you decide what to do. You may want to try tarceva which is a pill with little side effects-- you have many options.

My husband was given a poor prognosis and he is also coming up on a 4 year anniversary. Good luck to you- I hope you find a more positive doctor.

Rochelle

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Hi Ben,

Welcome here, I am also sorry you had to seek us out. But glad you did find us. We are the most knowledgable and support group of people.

I second what everyone said, by all means get a 2nd and third and fourth if need be. Never listen to there is no hope. That is bulls-it. There are so many people with stage IV who were told the same thing. They sought out other opinions, got treatment and they are still with us today.

I know who scared you must be but please do yourself a favor this is YOUR life, seek out others.

Good luck!!

Maryanne

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Ben,

So sorry to have to meet you under these circumstances. Please know how deep all the sentiments expressed are felt by all here on this board. As for your diagnosis and decisions, no one but you can make the "final" decision re: treatment. But it does help to look into options and hear what others have to say. I echo the sentiments about seeking a second opinion.

Cruise around the board and see how many Stage 3b-4's are out there. As for cancer being everywhere in your lungs, please see the PET scan of my hubby's lungs at the time of his diagnosis to the left (the black is the cancer). His lungs are almost clear now and it hasn't spread to other organs when last we checked! We kind of look at it as managing an illness (like diabetes, etc.), we may never be rid of it, but we can live with it. Don't let one Doctor sell you down the river! Quality of life definitely has its ups and downs and you need to know that, but it doesn't hurt to at least begin treatment and then quit at a later date if you aren't happy with the quality of your life. Just a suggestion.

Take care and keep us updated on your tests, etc. We are here for you, as so many have been there for everyone else who has this accursed disease.

Welthy

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Ben, welcome here! I, too, agree with the others -- get another opinion before you make any decisions about treatment. My wife was diagnosed with Stage IV NSCLC in Oct. '02 and given 9 months. She has been through a number of treatments, both chemo and radiation, and she is still here, living a good life, after 3 1/2 years. She cannot go at the pace she previously did, but she can go at a pace to enjoy life and help others. As mentioned, "The Road Less Traveled" category is for those choosing not to take conventional treatments. Good luck, and keep us posted. Don

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Hi Ben,

You must be in such shock. Your head must be spinning and you might feel a bit hopeless right about now. But let me tell you, there is ALWAYS hope. And you can find inspiration and hope right here!

It's ok to choose not to have any treatments, but before you make a final decision, I agree with the others. Get informed. Have all the facts.

Please get a second opinion. Please get your exact diagnosis, paperwork, tests, scans, etc...in order and then make your decision based on actual facts- not what that doctor "thinks" or what outdated statistics may say about similar diagnosis.

There are indeed alot of long term stage IV survivors and there are also extensive stage small cell survivors right here! Find out what you have, then find out what ALL the available treatment options there are- then you decide for yourself what YOU want to do.

Please keep us updated. We are here for you.

Blessings,

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Welcome, Ben! So sorry you have reason to be here, but glad you found this site. The members here are a wonderful resource for information and support. I know that deciding whether or not to undergo treatment can be empowering, no matter what way you decide to go. It is totally your decision to make, and that gives you a sense of control (even if just a little bit!) over your life. That being said, I hope you will arm yourself with all of the knowledge that is out there, and then feel good about whatever decision you make. Just know that we are all here for you NO MATTER WHAT you decide to do. Take care, and I will be praying for you!

Hugs,

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Hello, Ben

I am glad you're here but sorry there is a need.

At the risk of sounding like a broken record..agree that it's wise to get another opinion. Regardless of what you decide, at least you will be armed with all options that are available.

Blessings and prayers and please keep us posted.

Libby

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Still thinking about you, Ben. Wondering how we can support you? Are you stumped at any point along the way so far? This is all so much all at once for anyone to have to sit with. We have (almost all of us) been in your shoes. We know what it feels like. If there is anything more that you think we can help you with, please ask. I do like that you are not that far from MDAnderson.

Cindi o'h

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Dear Ben,

I also vote for a second opinion. My husband was diagnosed Stage IV with 8 brain mets, numerous bone mets, and a little in his liver, and he was given 6 months with treatment. He not only survived two years, but he was healthy and active and worked full-time, 10-12 hours a day, for well over 18 months. He was doing well even when we lost him and would still be here mowing the lawn, cracking jokes and griping about gas prices if he hadn't had a very, very, very rare reaction to chemo. He even took a motorcycle trip from Indiana down through the Smokey Mountains a year after he was diagnosed, and after lung radiation, two kinds of brain radiation, and I don't even remember how many chemo combos - lots!

I'm thinking that if you don't at least get a second opinion, later on you will always wonder.

I will pray and ask God to give you His guidance to help you make a decision. Either way you choose, you will have unconditional love and support from this site.

Love,

Peggy

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Ben,

Please don't give up on yourself, I know that this all can be overwhelming and confusing, but you've done one of the best things you could do is find this place! You will find the most kind and compassion people here, who not only can personally relate, but can give you valuable advice and direction. As many have said, you need the 2nd opinion, I know you went thru the VA, but please don't take offense, but the VA may not be the best place to deal with your cancer ( I know my dad was a disabled Vet ) and his best treatment was outside of the VA. Please re-think about another opinion, you have many people here thinking about and praying for you.....

Grace

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Ben,

Don't give up! My husband was diagnosed Stage IV in Feb. 2005. They tod us he would only live six months, maybe a year if he did chemo. He is cancer free today! There is always hope. If that doctor tells you there is not any hope, you should find one that will give you some hope. It was a long tough road, but well worth the trip for us. You can read his story in thw my story section. It is under my sign on bauner95. Good luck with whatever decision you make.

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