39yrs old male. with a family. non smoker. just diagnosed with stage IV NSCLC.

stunnedinCanada
stunnedinCanada Member Posts: 1
edited March 2014 in Lung Cancer #1
39yrs old male. with a family. non smoker. just diagnosed with stage IV NSCLC.

My PET came back and my whole left lung lit up.

As did the lymph nodes around the lung. A left posterior rib. My Iliac Crest bone. T2 in my spine.

A month ago, I thought I might have had allergies or pneumonia. Today, I fear I may not see the birth of my child in December.

I do not know what to do next. Heck, I don't even know what to call my situation. Am I dying? Does saying that mean I'm being defeatist? Everyone keeps saying a positive attitude is so important... but give me a break if I can't feel depressed on hearing this news somebody's expectations are out of whack...

Treatment should start next week if I can confirm whether I am EGFR or Alk positive.

But what then? How many people actually survive for very long when they are where I am?
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Comments

  • stayingcalm
    stayingcalm Member Posts: 650
    Stunned in Canada,
    Some time

    Stunned in Canada,

    Some time back I saw the results of a study comparing the outcomes for people with positive attitudes to people without - there was NO difference in outcome. The only difference is possibly in the way the people felt along the way - you know, if you're positive you feel better, even though the outcome is the same.

    You're not dying, you haven't even begun your treatment yet. Sounds like you and your oncologist are looking at targeted drugs, which can give great results. I started with lung cancer in both lungs and a lymph node, had mets to the brain and brain surgery, and today after a clinical trial with a targeted drug and then Tarceva, I'm in remission. Also, I don't have the EGFR mutation and the Tarceva worked for me anyway, does that for plenty of people.

    Just take things a step at a time. I've made it through five years and I'm still here with all my parts, working full time, walking, talking, playing videogames. Science is great!

    I hope for the best of luck for you :)

    Deb
  • catcon49
    catcon49 Member Posts: 398

    Stunned in Canada,
    Some time

    Stunned in Canada,

    Some time back I saw the results of a study comparing the outcomes for people with positive attitudes to people without - there was NO difference in outcome. The only difference is possibly in the way the people felt along the way - you know, if you're positive you feel better, even though the outcome is the same.

    You're not dying, you haven't even begun your treatment yet. Sounds like you and your oncologist are looking at targeted drugs, which can give great results. I started with lung cancer in both lungs and a lymph node, had mets to the brain and brain surgery, and today after a clinical trial with a targeted drug and then Tarceva, I'm in remission. Also, I don't have the EGFR mutation and the Tarceva worked for me anyway, does that for plenty of people.

    Just take things a step at a time. I've made it through five years and I'm still here with all my parts, working full time, walking, talking, playing videogames. Science is great!

    I hope for the best of luck for you :)

    Deb

    Stunned
    You absolutely have a right to your feelings. If you are feeling depressed, I believe that is understandable. But don't ever give up hope. You have some wonderful reasons to fight this awful dx. So when the depression subsides and it probably will ( if it doesn't don't be afraid to ask the doc for something.)focus your energy on getting better. Focus your entire body fighting off the cancer. And when that baby is born next dec. give it a big hug and kiss for everybody here.

    Best of luck, and God Bless.

    c
  • grandmado
    grandmado Member Posts: 10
    Please dont give up the fact
    Please dont give up the fact you can and will survive this. I will celebrate on July 7 this year being in remission 7 yrs now. If I can do it so can you. I am 78 yrs young and had 35 radiation with concurrent chemo in 2003. New drugs are being used now with great results.
    you may not be cured but you will get to remission hopefully. that's all we can ask for.
    Your not a defeatist nor are you dying. Your scared and rightfully so. If you can read some of the posts on here you;ll find plenty of heros who have been in your position.
    stay positive and above all take one day at a time. goodluck.
  • Donna70
    Donna70 Member Posts: 852
    grandmado said:

    Please dont give up the fact
    Please dont give up the fact you can and will survive this. I will celebrate on July 7 this year being in remission 7 yrs now. If I can do it so can you. I am 78 yrs young and had 35 radiation with concurrent chemo in 2003. New drugs are being used now with great results.
    you may not be cured but you will get to remission hopefully. that's all we can ask for.
    Your not a defeatist nor are you dying. Your scared and rightfully so. If you can read some of the posts on here you;ll find plenty of heros who have been in your position.
    stay positive and above all take one day at a time. goodluck.

    don't give up!!
    Hi,
    You have every right to feel what you are feeling and have to acknowledge the shock that comes with all this bad news. I am on the esophageal board but have a close friend with Stage IV Lung cancer. This is why when I saw your post I wanted to write to you. She had been told after they opened her up almost 2 yrs ago to pray for a miracle, when they found the cancer had spread farther than first suspected, but they gave her more chemo and then she was put on Tarceva for almost 1.5 yrs now and is NED, no evidence of disease. She had it in her lymphs, mediastinum and more than one place in her lungs. There is always hope, because they come up with more and more drugs that fight off the cancer. So after you recover from your shock, find the best drs you can and go fight it for your wife and your children and the rest of your family. People mean well when they talk about a positive attitude and believe me, I have heard it all, but you can say you have to be a realist with a positive attitude and if they don't have cancer, they can't tell you how to feel, actually no one can, it is so different for everyone of us that walks this road. My prayers for you!!! good luck.
    Donna70
  • gkukurin
    gkukurin Member Posts: 9
    Stunned, we are too
    Hi Stunned,

    We were just informed (Less than a week ago) that my father-in-law has stage IV NSCLC. It is comforting to read some of the responses here. The oncologist we spoke with was pretty depressing. So much so that we are/were considering alternative approaches from the get go. After reading about some of the results with Tarceva we might try that instead of European other alternative therapies.

    Keep your head up Stunned, we are just now shifting from stocked paralysis, to getting ready to rumble.

    Any one on the board have any experience with whole body hyperthermia, insulin poteniated chemotherapy or cancer vaccines?
  • Don't Give Up - Prayer's Your Way
    I joined this site b/c my husband was dx with lung cancer, had surgery, did chemo and now is cancer-free! He is now doing a "drug research study" for the next two years, of course 50/50 medication v/s placebo.

    His was also NSCLC. The first thing one wants to do including their family hence me wants to "freak out" but you just can't.
    God has a purpose and reason for everything that we experience / deal with on a daily basis.

    I know it is easier said than done but trust me, you will and your family will get through this. Prayer is Awesome & Powerful and our communication to God, so utilize it.

    Since the dx and everything that followed: my husband and I are so much closer to God, more faithful with our prayers and totally involved in our church. We even created a prayer site while he was in the hospital.

    I will add you to our prayer list and site (if you would like) b/c prayers are so amazing.

    Please keep us posted. You have a baby coming in December, so you have so much to fight and live for - don't give up!

    God Bless
    Michelle
  • Glenna M
    Glenna M Member Posts: 1,576
    Hard to have a positive attitude...
    I know it's hard to keep a positive attitude when you are first diagnosed. I don't think I developed mine until I started treatment and felt like I was doing everything in my power to fight this devastating disease.

    Until I started treatment I was in shock and depressed - automatically thought I was going to die. I was diagnosed May of '09 with NSCLC in my left lung and then a couple of weeks later I was diagnosed with SCC in my larynx. I thought WOW - this really is a death sentence, not only do I have to fight cancer but I have to fight two different types of cancer at the same time. My first great grandchild was due to be born in December and neither my family nor I thought I would be around to see him born. Guess what - I'm still here a year later and I'm still fighting!!! And I have the most beautiful great grandson and I plan on watching grow up ;-)

    I am not cured but I am in remission. I still see my ENT every month and still going for scans every three months but I won't complain because I am still alive and have adjusted to my new "normal". My doctors are very open and honest with me about the future, I will have cancer again, whether it's a recurrence or a new cancer they can't say, but they did tell me that I could stay in remission for years. I lost both of my brothers to cancer so this doesn't come as any shock to me but I do know that one brother was in remission for over 5 years but refused further treatments when his cancer returned. That was his decision to make, we all wished he would have fought it again as I know that I will fight with everything I have to prolong my life.

    Sorry to ramble on, I am just trying to say that you have to fight and I see no better reason to fight than the upcoming birth of your child. Please read more of the posts on this forum and you will find many long term survivors who were not given a very good prognosis.

    Please stay strong and keep fighting. Post again to let us know what is happening as there are many wonderful people here who will help you with any information, suggestions or questions you may have. We are also here when you just need to vent ;-)

    My best to you and your family,
    Glenna
  • pkaz53
    pkaz53 Member Posts: 84
    Glenna M said:

    Hard to have a positive attitude...
    I know it's hard to keep a positive attitude when you are first diagnosed. I don't think I developed mine until I started treatment and felt like I was doing everything in my power to fight this devastating disease.

    Until I started treatment I was in shock and depressed - automatically thought I was going to die. I was diagnosed May of '09 with NSCLC in my left lung and then a couple of weeks later I was diagnosed with SCC in my larynx. I thought WOW - this really is a death sentence, not only do I have to fight cancer but I have to fight two different types of cancer at the same time. My first great grandchild was due to be born in December and neither my family nor I thought I would be around to see him born. Guess what - I'm still here a year later and I'm still fighting!!! And I have the most beautiful great grandson and I plan on watching grow up ;-)

    I am not cured but I am in remission. I still see my ENT every month and still going for scans every three months but I won't complain because I am still alive and have adjusted to my new "normal". My doctors are very open and honest with me about the future, I will have cancer again, whether it's a recurrence or a new cancer they can't say, but they did tell me that I could stay in remission for years. I lost both of my brothers to cancer so this doesn't come as any shock to me but I do know that one brother was in remission for over 5 years but refused further treatments when his cancer returned. That was his decision to make, we all wished he would have fought it again as I know that I will fight with everything I have to prolong my life.

    Sorry to ramble on, I am just trying to say that you have to fight and I see no better reason to fight than the upcoming birth of your child. Please read more of the posts on this forum and you will find many long term survivors who were not given a very good prognosis.

    Please stay strong and keep fighting. Post again to let us know what is happening as there are many wonderful people here who will help you with any information, suggestions or questions you may have. We are also here when you just need to vent ;-)

    My best to you and your family,
    Glenna

    Stunned in Canada
    Don't ever give up try to keep a positive attitude I know when you get the initial prognosis you go into a state of shock you can't eat, can't sleep and you can't even think right. You have to accept it for what it is and get yourself mentally ready to take on your opponent its going to be the hardest fight you ever faced. I've had cancer twice bladder in 2001 and then SCLC in 2003 and still surviving. There are many survivors on this discussion board who walked in your shoes and felt as you do right now --stay strong - keep your faith -you will and can survive this my prayers are with you.
    Paul
  • cobra1122
    cobra1122 Member Posts: 244
    I think Everyone Is at First
    I am one of those keep a positive attitude people, because it sure beats giving up. I am a 2+yr both SCLC and NSCLC, with 30%of my heart working at this time, suffer TIA almost every month, have early onset of Altzheimers and Parkinson, am limited to a power wheelchair to get along, am on Hospice, and the cancer has mets to Bone and Brain. Do I get depressed, heck yes and angery too. But I also want to live as good as I can, so I try to keep a positive attitude.
    Does it mean I will live longer, who knows. But I can Laugh with my wife and family. I am getting through the best way I know how. I just turned 50 this month, and there was a lot of celebrating here, because I am still going. I even had my 5 grandchildren come here to spend time with grandpa.
    No one can tell you how to live and I by no means am trying, as an old biker and Marine I am hard headed and live the way I see fit. But I hope that you can find a positive in this and hold on to it. There are plenty of survivors on this site, with more years than me, so dont stop believing that you can keep going. That is one thing I have learned for sure, not to give up Hope.

    Our Prayers and Best Wishes to You, Your Family, and Everyone..,

    Dan (cobra1122) and Margi Harmon
  • cobra1122
    cobra1122 Member Posts: 244
    Just a Note
    Your to young to give up on Hope and you have strength to help you thro this. I wish you well and no matter what or how you chose to fight this disease, there will always be people on this site that are here to bounce things off of.

    Our Prayers and Best Wishes to You, Your Family, and Everyone..,

    Dan (cobra1122) and Margi Harmon
  • kv1967
    kv1967 Member Posts: 6
    cobra1122 said:

    Just a Note
    Your to young to give up on Hope and you have strength to help you thro this. I wish you well and no matter what or how you chose to fight this disease, there will always be people on this site that are here to bounce things off of.

    Our Prayers and Best Wishes to You, Your Family, and Everyone..,

    Dan (cobra1122) and Margi Harmon

    Thanks
    I just wanted to say thanks for your story Dan, I am also going through a similar situation. The stories here help becauce they give hope and the will to fight. I was shocked with my diagnosis because I don't feel sick, my lung function is normal . I start radiation to my head this week . I'm sorry is this doesn't make much sense but I'm still trying to get a grip on things
  • cobra1122
    cobra1122 Member Posts: 244
    kv1967 said:

    Thanks
    I just wanted to say thanks for your story Dan, I am also going through a similar situation. The stories here help becauce they give hope and the will to fight. I was shocked with my diagnosis because I don't feel sick, my lung function is normal . I start radiation to my head this week . I'm sorry is this doesn't make much sense but I'm still trying to get a grip on things

    Here for You
    I hear you, the sudden slap on the face, and it comes from no where. It is the hardest thing to comprehend. when I had my first heart attack at the age of 33 yrs old, I was in disbelief, I was too young ,in good health, it only happens to older people, what the heck is going on.
    After the Cancer diagnosis I was lost in my own mind, what are they telling me, I dont have that, it happens to others but I cant have it. I was just a year before having a stroke so this cant be happening now, I am getting better from my stroke so this has gotto be a joke.
    SHOCK is not even the word for what I was, but eventually in sank in and I learned to adapt, improvise and overcome what this diagnosis brings. We learned to laugh our way through this, and keep a positive attitude just to stay sane ( if we ever were).
    Never apologize for your feelings it is your right, unless someone has been through it they cant understand what this does to a persons brain or thought process. Sometimes you'll notice that I go off on some weird tangent, thats cause my brain is trying to speed along with everything and not let a peice of info fall away. Hang in there, we're here if you need us.

    Our Prayers and Best Wishes to You, Your Family, and Everyone...,

    Dan (cobra1122) and Margi Harmon
  • kv1967
    kv1967 Member Posts: 6
    cobra1122 said:

    Here for You
    I hear you, the sudden slap on the face, and it comes from no where. It is the hardest thing to comprehend. when I had my first heart attack at the age of 33 yrs old, I was in disbelief, I was too young ,in good health, it only happens to older people, what the heck is going on.
    After the Cancer diagnosis I was lost in my own mind, what are they telling me, I dont have that, it happens to others but I cant have it. I was just a year before having a stroke so this cant be happening now, I am getting better from my stroke so this has gotto be a joke.
    SHOCK is not even the word for what I was, but eventually in sank in and I learned to adapt, improvise and overcome what this diagnosis brings. We learned to laugh our way through this, and keep a positive attitude just to stay sane ( if we ever were).
    Never apologize for your feelings it is your right, unless someone has been through it they cant understand what this does to a persons brain or thought process. Sometimes you'll notice that I go off on some weird tangent, thats cause my brain is trying to speed along with everything and not let a peice of info fall away. Hang in there, we're here if you need us.

    Our Prayers and Best Wishes to You, Your Family, and Everyone...,

    Dan (cobra1122) and Margi Harmon

    Hope
    This was especially hard for me because i watched my mother die of sclc 11 years ago. I remind myself everyday that I am not dead yet and I am not my mother. I am 42 years old and have a wonderful wife and twog
    great kids. I will survive this. In my talk with my oncologist he told me that he will help me. I know there are no guarntees in life but I unted to stock around for a while longer.

    Kevin v
  • kristybree
    kristybree Member Posts: 1

    Stunned in Canada,
    Some time

    Stunned in Canada,

    Some time back I saw the results of a study comparing the outcomes for people with positive attitudes to people without - there was NO difference in outcome. The only difference is possibly in the way the people felt along the way - you know, if you're positive you feel better, even though the outcome is the same.

    You're not dying, you haven't even begun your treatment yet. Sounds like you and your oncologist are looking at targeted drugs, which can give great results. I started with lung cancer in both lungs and a lymph node, had mets to the brain and brain surgery, and today after a clinical trial with a targeted drug and then Tarceva, I'm in remission. Also, I don't have the EGFR mutation and the Tarceva worked for me anyway, does that for plenty of people.

    Just take things a step at a time. I've made it through five years and I'm still here with all my parts, working full time, walking, talking, playing videogames. Science is great!

    I hope for the best of luck for you :)

    Deb

    worried for my mom
    Hi, My mom was diagnosed 2 weeks ago with stage 4 non small cell lung cancer. It is too close to her spine to operate and she has lost some sensation in her legs. She has had radiation so far. we are waiting to hear when she can start chemo. That is great you are doing to well.

    I am looking for something to compare to. What kind of lung cancer did you have. what is this Tarceva drug i am reading about? Are you from Canada? Is that something we can get here?

    Kristyn
  • congoody
    congoody Member Posts: 73
    kv1967 said:

    Hope
    This was especially hard for me because i watched my mother die of sclc 11 years ago. I remind myself everyday that I am not dead yet and I am not my mother. I am 42 years old and have a wonderful wife and twog
    great kids. I will survive this. In my talk with my oncologist he told me that he will help me. I know there are no guarntees in life but I unted to stock around for a while longer.

    Kevin v

    To stunned in CANADA
    No one deserves to get cancer - no one decides who will get cancer - no matter what the stage or what your age, the shock and the anguish is not comprehensible unless you have been there - although I was "lucky" to have caught my cancer early, the risks for recurrence are high and my anxiety and fear are incomprehensible - I hate that the first question is "so how long did you smoke" - this is not a normal response when someone tells you they have cancer - it is usually "oh, I am so sorry, how can I help, what can I do " - but not with this one - I am also from Canada and wish you a future filled with health and happiness - warm regards, Connie from Canada.
  • DONCARLOS
    DONCARLOS Member Posts: 66
    STUNNED IN CANADA
    Hi: I have not written for a long time. This coming June 30, will one year since I had part of my lung taken out and members of this list helped me like you have no idea. I even experienced the breaking of my family when my wife could not stand my position any longer she left me and moved with one of my daughters left me alone with only a few months after my surgery and all because I drove her nuts with my constant worries about dying. I had every scan made and according with Drs. am clean of Cancer However, on January 18, 2010 they found that I had an ANEURYSM 4.8Cm on my Ascending Aorta and that made me go crazy again and that is when my family broke up. I have not learned yet how to live thinking about this thing rupturing, HOWEVER, I HAVE TOTALLY FORGOTTEN ABOUT CANCER. I will not see my Onc or my Thoracic Doctors until July when they will do anothner C Scan. I confess that I am totally lost becaue I am deadly afraid of the aneurysm although the Drs. want me to wait because they don't think its critical under 5Cm. You see...... You must have faith or you will drive everyone around you crazy, I am alone now and suffering even more because although I learned to live with the Cancer problem I am now building on something else but......I am learning to live with that also. I am 77 years old and I do feel OK, but extremely insecured. I do not see counselors, because I know what I have and what to expect. I have not given up I just learned that there is not much I can do about these things except follow Doctors Orders. Hang in there and you will be OK. I don't think my wife will ever come back but that is another issue. She is living happy with my oldest daughter and I am living with my youngest and her two children. I AM NOT HAPPY but I am learning how to cope with my situation. YOU WILL BE OK. Keep writing and reading this board.

    HAPPY MEMORIAL DAY TO ALL OF YOU, FROM A KOREAN WAR VETERAN.

    DON CARLOS
  • stayingcalm
    stayingcalm Member Posts: 650
    DONCARLOS said:

    STUNNED IN CANADA
    Hi: I have not written for a long time. This coming June 30, will one year since I had part of my lung taken out and members of this list helped me like you have no idea. I even experienced the breaking of my family when my wife could not stand my position any longer she left me and moved with one of my daughters left me alone with only a few months after my surgery and all because I drove her nuts with my constant worries about dying. I had every scan made and according with Drs. am clean of Cancer However, on January 18, 2010 they found that I had an ANEURYSM 4.8Cm on my Ascending Aorta and that made me go crazy again and that is when my family broke up. I have not learned yet how to live thinking about this thing rupturing, HOWEVER, I HAVE TOTALLY FORGOTTEN ABOUT CANCER. I will not see my Onc or my Thoracic Doctors until July when they will do anothner C Scan. I confess that I am totally lost becaue I am deadly afraid of the aneurysm although the Drs. want me to wait because they don't think its critical under 5Cm. You see...... You must have faith or you will drive everyone around you crazy, I am alone now and suffering even more because although I learned to live with the Cancer problem I am now building on something else but......I am learning to live with that also. I am 77 years old and I do feel OK, but extremely insecured. I do not see counselors, because I know what I have and what to expect. I have not given up I just learned that there is not much I can do about these things except follow Doctors Orders. Hang in there and you will be OK. I don't think my wife will ever come back but that is another issue. She is living happy with my oldest daughter and I am living with my youngest and her two children. I AM NOT HAPPY but I am learning how to cope with my situation. YOU WILL BE OK. Keep writing and reading this board.

    HAPPY MEMORIAL DAY TO ALL OF YOU, FROM A KOREAN WAR VETERAN.

    DON CARLOS

    Sorry, Don
    @ Don Carlos
    I'm sorry to hear about your split with your wife. I confess I don't understand how your fears drove her away and I think you are taking on too much responsibility for this...but when I get my marriage counselor license in the mail I'll let you know :) That and my medical license.

    Anyway, you've been missed!
    Deb
  • DONCARLOS
    DONCARLOS Member Posts: 66

    Sorry, Don
    @ Don Carlos
    I'm sorry to hear about your split with your wife. I confess I don't understand how your fears drove her away and I think you are taking on too much responsibility for this...but when I get my marriage counselor license in the mail I'll let you know :) That and my medical license.

    Anyway, you've been missed!
    Deb

    THANK YOU DEB
    I know for sure that I drove her crazy, so she went to live with my oldest daughter.

    I appreciate this list because its not the cancer or the lungs but the consequences that we face from these crisis. I am learning to cope. Believe me all of you guys helped me for the last year and it took me some time to write back because I was also getting into some nerves :-). I will try to keep my responses more positive and cheerful.

    Love you all

    DonCarlos
  • zinniemay
    zinniemay Member Posts: 522
    Lung cancer
    My husband of 36 years was treated for Throat cancer last year, He had 7 weeks of radation and Chemo. They said the got it all. But now They say he has stage 4 NSC squamous, both lungs, He can not have some of the treatment as he has already had it.Most the trails they do he will not be able to have because he had the treatments. They said he was healhty . But they gave him a year with out treatment two (maybe) with treatment. He never smoked nor drank .I know he is scared as I am. My heart is broken casue this is something I can't fix for him. We have two adult children. But really no friends. So I know the road we have will be all up hill. I know I don't write well enough to explain the feeling we have . But I truely belive that we will make it. But deep in side is the what ifs.
  • cobra1122
    cobra1122 Member Posts: 244
    zinniemay said:

    Lung cancer
    My husband of 36 years was treated for Throat cancer last year, He had 7 weeks of radation and Chemo. They said the got it all. But now They say he has stage 4 NSC squamous, both lungs, He can not have some of the treatment as he has already had it.Most the trails they do he will not be able to have because he had the treatments. They said he was healhty . But they gave him a year with out treatment two (maybe) with treatment. He never smoked nor drank .I know he is scared as I am. My heart is broken casue this is something I can't fix for him. We have two adult children. But really no friends. So I know the road we have will be all up hill. I know I don't write well enough to explain the feeling we have . But I truely belive that we will make it. But deep in side is the what ifs.

    You will get through it
    You and your husband have been through this road already, but together you will get through it. You described your feelings just fine, as it isn't easy to deal with everything this disease brings along.
    I pray that Gods Will be done, and that the both of you can cherish this time you have. It sounds as tho you've had enough experience in this to know that there are no forsures as in 1-2. Yrs. I was diagnosised in 08 with stage 4 lung cancer with mets to the lymphs, they gave me 1 to 1-1/2 yrs with treatment along with my complicated health issues i' ve beat every prognosis they have given me. So don't give up hope, it will help you get through these times along with a positive attitude. I am 50 yrs old , my wife and I have 3 children and 5 grandchildren, and we just keep plugging along, living for today, creating memories, laughing, and living.

    Our Prayers and Best Wishes to Your husband, You, Your Family, and Everyone.,
    Dan (cobra1122) and Margi Harmon