Stage IV NSCLC

joseph10
joseph10 Member Posts: 3
edited March 2014 in Lung Cancer #1
Hello everyone. I have been reading this forum for a month now but this is my first post. My mom, age 62, non-smoker, has recently been diagnosed with stage IV NSCLC. It has been difficult because I live far away so I'm not able to attend her appointments so I get all my information second or third hand. Today she had her first oncology consultation and the doctor told her that they will only do radiation to help her breathing. Apparently since the cancer has already spread to the lymph system and due to the large size of the tumor they will not do chemo. Is this normal protocol? Also, she has been having a lot a trouble breathing and is always out of breath but for some reason they won't give her oxygen at home.

Comments

  • mercey
    mercey Member Posts: 33
    #2
    Stage1V NSCLC
    Hi Joseph, I don't know alot but I do know you either need to find out more about the spread of the cancer or get another opinion.My lung cancer had spread to my lymph nodes and I was stage three..terminal.I recieved chemo and radiation even though they did not expect me to beat it.That was 21 months ago and as of today I am cancer free.Alot of lung cancer survivors on this site have been stage four with spread to the brain ,bones,etc. and are still survivors and I am sure they all had chemo.Find out the details of your mothers cancer before taking no treament with chemo for an answer.I think you need to take a trip and be with her and find out all of the why's.. This is not normal protocol for the most part..which is why you need to find out more.I lost a brother to a rare cancer three years ago.They did not do chemo because his had spread to so many parts of his body but he didn't know all the details himself about his own cancer and left it to his wife.She says today she wishes she would have at least gotten a second opinion.Miracles still happen.Don't give up without at least knowing all her options.Good luck..love and prayers.. jill
  • cobra1122
    cobra1122 Member Posts: 244
    #3
    SECOND OPINION
    Joe, please have your mom get a second opinion, soemthings just dont add up, I am a 2+yr survivor of stage 4 lung cancer both NSCLC and SCLC that has mets to other parts of my body.
    If you read my bio you'll see I have a complicated multiple Diagnosised health Problems, but I am still going strong thanks in part to the follow through of my Doctors and the treatments I have been given.
    I recieved Chemo as a pallative measure but it bought me more time, and I have not regretted going through it. Now why they wont give your mom oxygen to help with the breathing problems I have no idea, I am getting oxygen and I still smoke (I know how dumb that is).
    I am on Hospice and have been since Jan 09 when I suffered my 6th heart attack that took out most of my heart. They gave me 4-6 months, but I am still here. I suffered a 7th heart attack in June 09 but thanks to my Cardiologist I was given more time.
    I believe that a positive attitude and support system play a great deal in my survival, so I hope that your mom and your family keep that in mind, no matter what or how hard you need to think positive and give all the support in a positive manner you can.
    I suggest quite truthfully that if everything is as your mom says she get a second opinion, I think if nothing else it will make things alittle more clear. But Your Mom must not let herself just do whatever they say without understanding why and what is going on first.

    There are many long time survivors on this site ,with great information and suggestions, so use them, bounce things off them, the old saying been there done that applies, but no one has the same experience as the other nor the same side effects from treatments, in that respect everyone is different, but they can help still with suggestions snd opitions you might not think of.
    I am living proof there is always Hope, so think positive and help your mom stay as positive as possible, get a second opinion and a third if needed, have your mom make sure she understands everything they are saying, have her be hard nosed in that respect, the more she understands the better she can make informed decisions, and if you can get out to see her and find out first hand exactly what they are saying and why.

    Our Prayers and Best Wishes to Your Mom, You, and Your family,
    Dan (cobra1122) and Margi Harmon
  • joseph10
    joseph10 Member Posts: 3
    #4
    mercey said:

    Stage1V NSCLC
    Hi Joseph, I don't know alot but I do know you either need to find out more about the spread of the cancer or get another opinion.My lung cancer had spread to my lymph nodes and I was stage three..terminal.I recieved chemo and radiation even though they did not expect me to beat it.That was 21 months ago and as of today I am cancer free.Alot of lung cancer survivors on this site have been stage four with spread to the brain ,bones,etc. and are still survivors and I am sure they all had chemo.Find out the details of your mothers cancer before taking no treament with chemo for an answer.I think you need to take a trip and be with her and find out all of the why's.. This is not normal protocol for the most part..which is why you need to find out more.I lost a brother to a rare cancer three years ago.They did not do chemo because his had spread to so many parts of his body but he didn't know all the details himself about his own cancer and left it to his wife.She says today she wishes she would have at least gotten a second opinion.Miracles still happen.Don't give up without at least knowing all her options.Good luck..love and prayers.. jill

    Mercey...thank you for your
    Mercey...thank you for your response.

    I got some clarification late yesterday on a few things. Turns out that since they cannot do radiation and chemo at the same time, they are starting with radiation, and then they will reassess afterward and then start chemo to treat the other smaller tumors on the outer edge of her lung.

    They do not yet have the results from the bone scan and PET scan but we are worried as she has been having pain in her arm and has been suffering from headaches and blurred version.

    I do appreciate your words of hope. I was able to spend the holidays with my mom and am planing on taking another trip in a few weeks.
  • joseph10
    joseph10 Member Posts: 3
    #5
    cobra1122 said:

    SECOND OPINION
    Joe, please have your mom get a second opinion, soemthings just dont add up, I am a 2+yr survivor of stage 4 lung cancer both NSCLC and SCLC that has mets to other parts of my body.
    If you read my bio you'll see I have a complicated multiple Diagnosised health Problems, but I am still going strong thanks in part to the follow through of my Doctors and the treatments I have been given.
    I recieved Chemo as a pallative measure but it bought me more time, and I have not regretted going through it. Now why they wont give your mom oxygen to help with the breathing problems I have no idea, I am getting oxygen and I still smoke (I know how dumb that is).
    I am on Hospice and have been since Jan 09 when I suffered my 6th heart attack that took out most of my heart. They gave me 4-6 months, but I am still here. I suffered a 7th heart attack in June 09 but thanks to my Cardiologist I was given more time.
    I believe that a positive attitude and support system play a great deal in my survival, so I hope that your mom and your family keep that in mind, no matter what or how hard you need to think positive and give all the support in a positive manner you can.
    I suggest quite truthfully that if everything is as your mom says she get a second opinion, I think if nothing else it will make things alittle more clear. But Your Mom must not let herself just do whatever they say without understanding why and what is going on first.

    There are many long time survivors on this site ,with great information and suggestions, so use them, bounce things off them, the old saying been there done that applies, but no one has the same experience as the other nor the same side effects from treatments, in that respect everyone is different, but they can help still with suggestions snd opitions you might not think of.
    I am living proof there is always Hope, so think positive and help your mom stay as positive as possible, get a second opinion and a third if needed, have your mom make sure she understands everything they are saying, have her be hard nosed in that respect, the more she understands the better she can make informed decisions, and if you can get out to see her and find out first hand exactly what they are saying and why.

    Our Prayers and Best Wishes to Your Mom, You, and Your family,
    Dan (cobra1122) and Margi Harmon

    Thanks, Dan. Your story is
    Thanks, Dan. Your story is inspirational. We have all tried to stay positive, and my mom really does have a great attitude about all this.

    The problem is that my mom lives in a country with socialized medicine so second opinions are hard to come by. This is the explanation I am getting on why they won't give her oxygen: It won't do any good because the tumor is taking all the O2 enriched blood from one lung, and the other lung is doing all the work which is causing the shortness of breath. Doesn't seem to make sense to me, but I am not a doctor.

    Another disconcerting revelation today is they are not going to do a PET scan because they are only concerned about the main tumor in her lungs, and PET scans are for those who are not yet considered "terminal". This does not instill a lot of hope.
  • cobra1122
    cobra1122 Member Posts: 244
    #6
    joseph10 said:

    Thanks, Dan. Your story is
    Thanks, Dan. Your story is inspirational. We have all tried to stay positive, and my mom really does have a great attitude about all this.

    The problem is that my mom lives in a country with socialized medicine so second opinions are hard to come by. This is the explanation I am getting on why they won't give her oxygen: It won't do any good because the tumor is taking all the O2 enriched blood from one lung, and the other lung is doing all the work which is causing the shortness of breath. Doesn't seem to make sense to me, but I am not a doctor.

    Another disconcerting revelation today is they are not going to do a PET scan because they are only concerned about the main tumor in her lungs, and PET scans are for those who are not yet considered "terminal". This does not instill a lot of hope.

    There is always Hope
    when they say terminal, we are all terminal, it does not mean right this minute, so there is always time for hope.
    I still dont understand why no oxygen, my case is similar in that regard, yet they feel that if I have more oxygen going in it will help in the long run.
    But like you I am no Doctor, so we must leave that in their hands, but research and see if there is anyway to see another Doctor, I know its hard but dont give up.

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

    NEVER GIVE UP HOPE, WHERE THERE IS HOPE THERE IS A CHANCE.

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