Well, well, well...

ksusan
ksusan Member Posts: 8 Member
in Lung Cancer #1

It was suggested to me that I check out CancerGrace.org to learn about my diagnosis of NSCLC Stage III so I did.

After reading one of Dr. West's posts on lymph node involvement, it was clear that when mediastinal lymph nodes appear normal but during surgery test positive for microscopic cancer cells, a 5-year survival is out of the question. This means my doctors have been lying to me. 

I  can't function now and don't trust my doctors because I have asked about my prognosis many times and never was I told treatment would be useless. Not sure what my point was in posting this but I now feel hopeless and have wasted time with useless treatments.

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Ksusan

    Sorry you had to find us.  Will you please check out the inspire web site.  There is a lot of activity there, and probably someone with your dx that might be helpful.

    Please don't give up hope, there are many new txs coming out everyday.  I wish you well. Lori

  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #3

    "After reading one of Dr. West's posts on lymph node involvement, it was clear that when mediastinal lymph nodes appear normal but during surgery test positive for microscopic cancer cells, a 5-year survival is out of the question."

    Are you sure it really said that? "Out of the question" means zero probability, which amounts to certainty, which is wrong. The stats may not be good, but group stats do not apply to individuals, and I would all but guarantee that there are more than a few individuals with the above characteristics who are looking back at five years.

    Your docs haven't told you that treatment would be useless, because nobody can predict the future, and the odds are your treatment would NOT be useless.

    P.S.:

    What Z said about checking out Inspire. There's a fair amount of folklore, fiction, and fluff to wade through over there, but the traffic is so much higher than at any other site I've checked that you have a high probability of getting a lot of useful response.

  • dennycee
    dennycee Member Posts: 857 Member
    #4
    Those numbers

    Gotta agree with XRR, those numbers are based on tens of 1000s and cannot predict an individuals response.  Your general health anso location of the mass, etc. have different influences on that number.  When talking about those numbers- even Dr Wests numbers, there is always some kind of number like only 5% or 10% survival rate in something- if you fall in that 5-10%, your chances suddenly increase to 100%.  

    Do you have any reason to believe that you can't fall into that 5-10%?  My drs told me I had 10-15 months to live, that was in October of 2010.  Next time you are over on the Inspire site, look up stage4survivor.  has was diagnosed with stage 4 nsclc because of brain mets more than 13 years ago.  He had another round of brain mets two years later and is still doing great.  There is no way to predict who will fall into which side of those numbers. But I can tell you this with certainty- If you believe you are going to die, you certainly will.  By reaching out and trying to educate yourself you have actually increased your odds a bit.  If you would consider reading one more thing from cancergrace, this time from an oncology social workers perspective.  

    I have copied this list from one of my favorite websites.  They are excellent guides to live by.  They were compiled by Leah deRoulet, a social worker, recently retired from the Swedish Cancer Institute in Seattle, WA  

     

    DAILY THOUGHTS FOR YOUR MENTAL COMPUTER

     

    People have recovered from every type of cancer.
    Cancer patients can expect to live longer than either heart attack  or stroke victims.
    A positive attitude helps let go of stress and worry (I know that is not always easy to maintain).
    It helps to learn the details of your kind of cancer.
    A fighting spirit is healthier than stoic acceptance.
    Many patients whom doctors consider difficult are those who are most likely to do well, or live longer than expected.
    A fighting spirit can strengthen your immune response.
    It’s better to express your feelings than to bottle them up.
    Hope and trust help counteract stress.
    Stress comes from your own interpretation of events (This is a tough one to get a handle on. Consider how your own self-talk impacts your thinking about your situation).
    Hope gives you control.
    Refusal to hope is a decision to die (One must hope that the treatment will be of value in extending life, or why bother to take it? At that point, it is self-defeating.)
    Consider yourself an equal partner with your doctor in achieving recovery or response.
    Listen to your body.
    Remember you have power over your body.
    Don’t make a career of having cancer.
    Don’t save up real living for tomorrow, Live your best today and every day.

     

    For the entire entry visit here: 

     

  • glcs52
    glcs52 Member Posts: 16
    #5
    dennycee said:

    Those numbers

    Gotta agree with XRR, those numbers are based on tens of 1000s and cannot predict an individuals response.  Your general health anso location of the mass, etc. have different influences on that number.  When talking about those numbers- even Dr Wests numbers, there is always some kind of number like only 5% or 10% survival rate in something- if you fall in that 5-10%, your chances suddenly increase to 100%.  

    Do you have any reason to believe that you can't fall into that 5-10%?  My drs told me I had 10-15 months to live, that was in October of 2010.  Next time you are over on the Inspire site, look up stage4survivor.  has was diagnosed with stage 4 nsclc because of brain mets more than 13 years ago.  He had another round of brain mets two years later and is still doing great.  There is no way to predict who will fall into which side of those numbers. But I can tell you this with certainty- If you believe you are going to die, you certainly will.  By reaching out and trying to educate yourself you have actually increased your odds a bit.  If you would consider reading one more thing from cancergrace, this time from an oncology social workers perspective.  

    I have copied this list from one of my favorite websites.  They are excellent guides to live by.  They were compiled by Leah deRoulet, a social worker, recently retired from the Swedish Cancer Institute in Seattle, WA  

     

    DAILY THOUGHTS FOR YOUR MENTAL COMPUTER

     

    People have recovered from every type of cancer.
    Cancer patients can expect to live longer than either heart attack  or stroke victims.
    A positive attitude helps let go of stress and worry (I know that is not always easy to maintain).
    It helps to learn the details of your kind of cancer.
    A fighting spirit is healthier than stoic acceptance.
    Many patients whom doctors consider difficult are those who are most likely to do well, or live longer than expected.
    A fighting spirit can strengthen your immune response.
    It’s better to express your feelings than to bottle them up.
    Hope and trust help counteract stress.
    Stress comes from your own interpretation of events (This is a tough one to get a handle on. Consider how your own self-talk impacts your thinking about your situation).
    Hope gives you control.
    Refusal to hope is a decision to die (One must hope that the treatment will be of value in extending life, or why bother to take it? At that point, it is self-defeating.)
    Consider yourself an equal partner with your doctor in achieving recovery or response.
    Listen to your body.
    Remember you have power over your body.
    Don’t make a career of having cancer.
    Don’t save up real living for tomorrow, Live your best today and every day.

     

    For the entire entry visit here: 

     

    Clap, clap..dennycee.  Always

    Clap, clap..dennycee.  Always hope !  I agree, there is any kindof informatoin out there, alot will contrident another.  Stay hopeful and keep on LIVING, not just existing.  We all have our down moments,,  but stay around positive people to help lift you up.

     

    - Gail

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