Need answers....advice...feeling so lost

cvercillo
cvercillo Member Posts: 5
in Lung Cancer #1

My mom was diagnosed with stave iv lung cancer with mets to liver and lymphnodes.  She did 4 rounds of chemo and that has been it.  They tell us that 4 rounds is enough since the tumours have shrunk to half their size. No further chemo will help.  They say that radiation will not help her and they won't operate because it has spread.  I feel that there must be other options. I feel like they are telling us to just "sit and wait for it to take your life".  My mom is only 61 years old. 

Just yesterday she went to the emergency room, they told her the tumours have now double in size since her last CT Skan (only 3 weeks ago).  They say it is becoming much more aggressive. The ER doctor told her to follow up with her oncologist. 

My mom feels that to only give her 4 rounds of chemo and tell her they can do nothing else is wrong.  She has asked for radiation, more chemo or surgery. The answer is always the same, you are stage iv and nothign can be done.  We did chemo to hopefully extend your life for a few months.  They say that if it was localized to ony the lung then maybe we could try something else.  I am at a total loss.  She wants to fight this battle and I want to stand by her and help her fight (as much as I can).  I have read on this site how others have lung cancer with mets, and that they have had other treatments.  How do we get the doctor to listen or try something.  She would rather die trying than die by rolling over. 

I would love to hear any of your stories, successes, disappointments. Have anyone had issues with their oncologist over treatments (or lack of).

Thank you in advance everyone... 

Comments

  • gerhart__dot
    gerhart__dot Member Posts: 3
    #2
    lung cancer

    I would get another opinion. It will make you feel better to talk to another oncologist. Talk to people in your area that have used an oncologist,find out who they used. 

  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #3
    I agree with Gerhart

    You want a second opinion, and from a doctor who specializes in lung cancer if at all possible. If there isn't such a person or major cancer center in your area, you may have to seek a consultation elsewhere. You aren't guaranteed to get a different answer, but you may well.

    I can't provide a personal story, because mine, although metastasized to lymph nodes, was in a confined area and could be hit by radiation all in one shot at the same time I was getting chemo. That's not practically possible in all cases. Concurrent with getting the second opinion, I'd be asking the current onco whether radiation wasn't possible, and if not, for what reason, or whether they're just not recommending it because statistics say it's not likely to help.

    If your mom is determined to fight at all costs, those are two different things.

  • cvercillo
    cvercillo Member Posts: 5
    #4
    Ex_Rock_n_Roller said:

    I agree with Gerhart

    You want a second opinion, and from a doctor who specializes in lung cancer if at all possible. If there isn't such a person or major cancer center in your area, you may have to seek a consultation elsewhere. You aren't guaranteed to get a different answer, but you may well.

    I can't provide a personal story, because mine, although metastasized to lymph nodes, was in a confined area and could be hit by radiation all in one shot at the same time I was getting chemo. That's not practically possible in all cases. Concurrent with getting the second opinion, I'd be asking the current onco whether radiation wasn't possible, and if not, for what reason, or whether they're just not recommending it because statistics say it's not likely to help.

    If your mom is determined to fight at all costs, those are two different things.

    2nd opinion

    My mom is seeing an oncologist who specializes in lung cancer.  She has seen the radiation oncologist, who says that if it is in more than one organ we can't do radiation.  My mom keeps asking for better answers on why, but that is what we get.  We live in a major city (Ottawa, ON Canada) and have a great cancer centre.  She has 1 spot on lung, 1 spot on liver and some in the lymph nodes.  We have another appointment coming up and I will bring up the idea of a second opinion and more concrete answers.  They tell us that the chemo they did is to help prolong her life a few months. Cancer really sucks! (sorry for venting).

     

  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #5
    cvercillo said:

    2nd opinion

    My mom is seeing an oncologist who specializes in lung cancer.  She has seen the radiation oncologist, who says that if it is in more than one organ we can't do radiation.  My mom keeps asking for better answers on why, but that is what we get.  We live in a major city (Ottawa, ON Canada) and have a great cancer centre.  She has 1 spot on lung, 1 spot on liver and some in the lymph nodes.  We have another appointment coming up and I will bring up the idea of a second opinion and more concrete answers.  They tell us that the chemo they did is to help prolong her life a few months. Cancer really sucks! (sorry for venting).

     

    The multiple organ situation

    The multiple organ situation makes it clear why they won't do radiation; I doubt there would be any differing opinions on that. I would guess the best that could expected from a second opinion might be suggestions for different chemos, but there might really not be any good answers. Are you allowed to go to a different area, like Toronto? I'm just guessing that might be "where it's at" in Canada, owing to the size of the place, but I don't know.

    I'm assuming she has been tested for driving mutations and found not to have any for which targeted drugs have been developed. That's the only other thing I can think of.

  • kikirio
    kikirio Member Posts: 5
    #6
    Sorry to hear that you are

    Sorry to hear that you are going through this terrible experience. You could get a second opinion, it may help that if they can't help her, they could get her to try and enjoy what time she has left with you & family. I just went through this not only with my father but his brother. Within two weeks of each other, they where dignosed stage 4 lung cancer. My uncle from smoking and my father from asbestes. It was the worse expereince of our lives. My uncle could have done kemo but the length of time it would have given him ( being sick from it) wasn't worth it. Only adding a few months. My father, having mestothelioma, it would have shortened his life. They both went through the same stages, weight loss, not being able to eat cause food tasted so bad, pain. But both families made the best of every day we had with our fathers, husband, grandfathers. Our family live very close to each other, so we had Sunday diners at my parents ( dad not being able to sit at the table the few Sundays we had him with us. We were able to get him over to spend time with his brother a few times. We laughed together, cried together. We gave eahc other comfort & support. My suggestion is, enjoy the time you have with her, every mintue. Get involved with hospice if you have one near. They we a gift to us. They both died within four months of dignoses and my uncle dies 6 weeks before my dad, to the day ( on Sunday and at 4pm) give a few minutes. It will broke your heart to watch it, more than you will ever know. It has been about 10 weeks and I still can't stand being here without him. But we said the things we needed to say & hear. I told him many time how much I would miss him and how much he meant to me and that I was glad he was my dad. But their suffering is over. I prayed everyday when he got bad that God would take him home. Reach out to family & friends. I hope she can come to terms if that is what is t be. Lung cancer is terrible I hate to see you go through this. Inform yourself on what is to come. God Bless!

     

  • cvercillo
    cvercillo Member Posts: 5
    #7
    kikirio said:

    Sorry to hear that you are

    Sorry to hear that you are going through this terrible experience. You could get a second opinion, it may help that if they can't help her, they could get her to try and enjoy what time she has left with you & family. I just went through this not only with my father but his brother. Within two weeks of each other, they where dignosed stage 4 lung cancer. My uncle from smoking and my father from asbestes. It was the worse expereince of our lives. My uncle could have done kemo but the length of time it would have given him ( being sick from it) wasn't worth it. Only adding a few months. My father, having mestothelioma, it would have shortened his life. They both went through the same stages, weight loss, not being able to eat cause food tasted so bad, pain. But both families made the best of every day we had with our fathers, husband, grandfathers. Our family live very close to each other, so we had Sunday diners at my parents ( dad not being able to sit at the table the few Sundays we had him with us. We were able to get him over to spend time with his brother a few times. We laughed together, cried together. We gave eahc other comfort & support. My suggestion is, enjoy the time you have with her, every mintue. Get involved with hospice if you have one near. They we a gift to us. They both died within four months of dignoses and my uncle dies 6 weeks before my dad, to the day ( on Sunday and at 4pm) give a few minutes. It will broke your heart to watch it, more than you will ever know. It has been about 10 weeks and I still can't stand being here without him. But we said the things we needed to say & hear. I told him many time how much I would miss him and how much he meant to me and that I was glad he was my dad. But their suffering is over. I prayed everyday when he got bad that God would take him home. Reach out to family & friends. I hope she can come to terms if that is what is t be. Lung cancer is terrible I hate to see you go through this. Inform yourself on what is to come. God Bless!

     

    Thank you

    Thank you all for your replies.  It does break my heart to see the suffering she is going through and the suffering she will go through. Ironically, only 2 years ago I was working at the Ottawa Cancer Centre as an EA to the Head of Oncology who specializes in Lung Cancer.  I know all the doctors and I do trust them, but it is soooo different when it is YOUR loved one.  You want more, you want answers and you want miracles.  My mom is going to see the oncologist soon and we will see if they will allow her to do more chemo or if it will even help.

    We will definitely cherish the time we have left with her.  It is very hard to believe that we may end up losing her so soon.  To be honest though, I want her suffering to end. 

    I lost my father manuy years ago.  He did not pass from cancer, but had a heart attack and died in his sleep at the very young age of 33.  My mom was a widow at 29.  I used to think that the sudden death was hard to deal with but now...wow, seeing my mom fight and suffer is more horrific.

    Life is way too short and so precious.  To all of you survivors out there, keep up the fight!

  • chessca
    chessca Member Posts: 1
    #8
    cvercillo said:

    Thank you

    Thank you all for your replies.  It does break my heart to see the suffering she is going through and the suffering she will go through. Ironically, only 2 years ago I was working at the Ottawa Cancer Centre as an EA to the Head of Oncology who specializes in Lung Cancer.  I know all the doctors and I do trust them, but it is soooo different when it is YOUR loved one.  You want more, you want answers and you want miracles.  My mom is going to see the oncologist soon and we will see if they will allow her to do more chemo or if it will even help.

    We will definitely cherish the time we have left with her.  It is very hard to believe that we may end up losing her so soon.  To be honest though, I want her suffering to end. 

    I lost my father manuy years ago.  He did not pass from cancer, but had a heart attack and died in his sleep at the very young age of 33.  My mom was a widow at 29.  I used to think that the sudden death was hard to deal with but now...wow, seeing my mom fight and suffer is more horrific.

    Life is way too short and so precious.  To all of you survivors out there, keep up the fight!

    stage 4 lung cancer

    My sister had lung cancer at age 59 state IV.  They gave her 3 months.  She enrolled in an expermential therapy at the Moffett Center in Florida.  She also drank Cell Quest one bottle a day.  This gave her 4 1/2 more years before it went to her brain.  I also found out that  later she had stopped the Cell Quest drink because it was too expensive.  Her quality of life was very good till it hit the brain.  I have just found out that I now have lung cancer state 1A.  I have had an operation with a wedge removal and I am now recouping.  But the dr states that I have something that looks like broken glass in the left lung, so we now have to do a biospy on that.  I am thinking of taking the CellQuest myself.  Does anyone have any other holistic things to take or eat that might help.  Thanks in advance.

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