Something I wrote on my caring bridge journal. It seemed worth reposting here. Merry christmas

dhs1963
dhs1963 Member Posts: 513
in Kidney Cancer #1

[RANT] Based on reading research papers on the internet, the mass on my lung is likely a metatseses of my Kidney tumor.  If that is the case, then my cancer is stage IV, not stage I.  The 5 year survival rate is pretty low....I can find numbers of 8%...or I can find numbers (for single lung mass) of 60%).  Then there is the fact that there are probably kidney cancer cells in my blood/lymph system.  So, new tumors can form.  What I note though is a lot of the mortality figures is based on older data -- before the modern treatments.  Also, the internet has not seen my scans -- they have not seen the specific item on the CT scan.  The internet does not know this about me.  While google may know almost everything about me, HIPAA does not allow it to see the volume renderings.  Otherwise, I would see popup adds for eternal care, and for religions pointing out it is not too late to repent.[/RANT]

 
All kidding aside, there is a chance that I am suffering from data fed acute hypochondria.  I hope so.  I really love watching my daughter grow up, listening to her play the Piano.  If the mass is real, the reality of my life changes.  I might win round two.  But the cancer probably will win -- baring a cure at the molecular level.   However, there is a difference in the cancer winning when I am 90 compared to when I am 49.  Heck, I need to see Bryce Harper hit his 1000th home run.  I need to see Abigail's Bat Mitzvah.
 
Mostly, I wait find out that this blog was premature, and I am suffering from internet exacerbated acute hypochondria.

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Statistics and prognosis

    David, this is a well-aired topic - you'll find voluminous discussions of it even on fairly recent threads here and you might find it helpful to read a few of them.  Aside from the fundamental invalidity of applying population data to individual cases, there's the fact which you've discovered yourself that all of the data on which the calculators and nomograms are based are hopelessly out-of-date, preceding the recent wave of new drugs, improved posology, alternative treatment modalities and the insights of integrative approaches. 

    For me, this is elegantly captured in a clarion call from one of my favourite posters here, donna lee, and it's just about my favourite mantra - she said:

    "When you get into Statistics, remember we are the crew that is changing those numbers". 

    You'll not only dance at Abigail's Bat Mitzvah, you'll have to foot the bill for her wedding and spoil her children rotten with presents and see them agonise over their upcoming uni, exams and career choices. 

    Don't give up on researching on the Web and elsewhere - keep learning all you can but keep your critical guard up at all times in what you read. An absolutely seminal essay which you've probably not yet had occasion to come across is "The Median Isn't the Message" by Stephen J. Gould.  It can be found on the website of the late, great Steve Dunn at:

    http://cancerguide.org/median_not_msg.html

    If you haven't seen it, I strongly recommend it - it's hard-going at some points if you're not a bit of a scholar but I think you'll cope fine with it and find it helpful.  (Same goes for your namesake, but DMike has possibly already read it?)

     

     
  • dhs1963
    dhs1963 Member Posts: 513
    #3
    Texas_wedge said:

    Statistics and prognosis

    David, this is a well-aired topic - you'll find voluminous discussions of it even on fairly recent threads here and you might find it helpful to read a few of them.  Aside from the fundamental invalidity of applying population data to individual cases, there's the fact which you've discovered yourself that all of the data on which the calculators and nomograms are based are hopelessly out-of-date, preceding the recent wave of new drugs, improved posology, alternative treatment modalities and the insights of integrative approaches. 

    For me, this is elegantly captured in a clarion call from one of my favourite posters here, donna lee, and it's just about my favourite mantra - she said:

    "When you get into Statistics, remember we are the crew that is changing those numbers". 

    You'll not only dance at Abigail's Bat Mitzvah, you'll have to foot the bill for her wedding and spoil her children rotten with presents and see them agonise over their upcoming uni, exams and career choices. 

    Don't give up on researching on the Web and elsewhere - keep learning all you can but keep your critical guard up at all times in what you read. An absolutely seminal essay which you've probably not yet had occasion to come across is "The Median Isn't the Message" by Stephen J. Gould.  It can be found on the website of the late, great Steve Dunn at:

    http://cancerguide.org/median_not_msg.html

    If you haven't seen it, I strongly recommend it - it's hard-going at some points if you're not a bit of a scholar but I think you'll cope fine with it and find it helpful.  (Same goes for your namesake, but DMike has possibly already read it?)

     

     
    That is a good article

    The two main points are: look at distributions, not means/medians. And 2) statistics are not meaningful if the baseline changes.  For us, that means treatment changed.  We do not have the stastiical basis for prognosis with these rules.  

    Also, other work shows a single met to be outside the norm.  

     

    The point I was trying to make is if I believe what I read on the internet, I am in bad shape.  At this point, I do not even know if the mass in my lung is 1) malignent, and 2) a metastasis.  For me, I was digging, hoping to find things to grasp on to.  It is the people on this board that give me hope.  Because they are alive.  

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    dhs1963 said:

    That is a good article

    The two main points are: look at distributions, not means/medians. And 2) statistics are not meaningful if the baseline changes.  For us, that means treatment changed.  We do not have the stastiical basis for prognosis with these rules.  

    Also, other work shows a single met to be outside the norm.  

     

    The point I was trying to make is if I believe what I read on the internet, I am in bad shape.  At this point, I do not even know if the mass in my lung is 1) malignent, and 2) a metastasis.  For me, I was digging, hoping to find things to grasp on to.  It is the people on this board that give me hope.  Because they are alive.  

     

    Finding comfort

    It all depends on what you regard as bad shape.  Anyone in my position would swap their prognosis for yours in a heartbeat but, maybe foolishly, I don't regard myself as 'in bad shape'. 

     

    Of course, having cancer, we're both in bad shape compared with someone who's in complete good health. But you clearly mean that you're very apprehensive about how long you've got left, even before establishing that you actually do have mets.  Lung mets, if you have them, are more successfully treated than most other mets and you could be cured in short order. 

     

    You're right about drawing strength from this forum - there are some here who have been, and will be, here for many years to come, with prognoses far worse than yours.  Anyway, Friday's not far away, after which you'll have a clearer picture.

  • dhs1963
    dhs1963 Member Posts: 513
    #5
    Texas_wedge said:

    Finding comfort

    It all depends on what you regard as bad shape.  Anyone in my position would swap their prognosis for yours in a heartbeat but, maybe foolishly, I don't regard myself as 'in bad shape'. 

     

    Of course, having cancer, we're both in bad shape compared with someone who's in complete good health. But you clearly mean that you're very apprehensive about how long you've got left, even before establishing that you actually do have mets.  Lung mets, if you have them, are more successfully treated than most other mets and you could be cured in short order. 

     

    You're right about drawing strength from this forum - there are some here who have been, and will be, here for many years to come, with prognoses far worse than yours.  Anyway, Friday's not far away, after which you'll have a clearer picture.

    Yes, Bad is relative....

    Thank you TW! 

  • I am alive
    I am alive Member Posts: 315
    #6
    dhs1963 said:

    Yes, Bad is relative....

    Thank you TW! 

    And all things are relative

    When I was first dx docs told me to stay away from the Internet. Too much of the info out there is woefully outdated. Every cancer is different. Medians are only medians. Of course they also don't want you to freak out on them. Generally, though, for good mental & emotional health you don't want to dwell on expiration dates. What is to be gained from it? They are not arbitrary. Instead of enjoying today -or tomorrow, or next week, or next year - that preoccupation will only put you in a dark, worrisome place, over which you have no control. One day I counted all the family & friends who have died during the eight years I have been dealing with kidney cancer and I was astounded - I came up with nine. Only one of whom had cancer. Bottom  line: you just never know. So why not assume you will be an active warrior for many, many years?  Visualize yourself at your daughter's college graduation or wedding and just choose to move forward, cancer be damned. Spit in its eye! Enter 2013 with your boxing gloves on! 

  • DMike
    DMike Member Posts: 259
    #7
    Texas_wedge said:

    Statistics and prognosis

    David, this is a well-aired topic - you'll find voluminous discussions of it even on fairly recent threads here and you might find it helpful to read a few of them.  Aside from the fundamental invalidity of applying population data to individual cases, there's the fact which you've discovered yourself that all of the data on which the calculators and nomograms are based are hopelessly out-of-date, preceding the recent wave of new drugs, improved posology, alternative treatment modalities and the insights of integrative approaches. 

    For me, this is elegantly captured in a clarion call from one of my favourite posters here, donna lee, and it's just about my favourite mantra - she said:

    "When you get into Statistics, remember we are the crew that is changing those numbers". 

    You'll not only dance at Abigail's Bat Mitzvah, you'll have to foot the bill for her wedding and spoil her children rotten with presents and see them agonise over their upcoming uni, exams and career choices. 

    Don't give up on researching on the Web and elsewhere - keep learning all you can but keep your critical guard up at all times in what you read. An absolutely seminal essay which you've probably not yet had occasion to come across is "The Median Isn't the Message" by Stephen J. Gould.  It can be found on the website of the late, great Steve Dunn at:

    http://cancerguide.org/median_not_msg.html

    If you haven't seen it, I strongly recommend it - it's hard-going at some points if you're not a bit of a scholar but I think you'll cope fine with it and find it helpful.  (Same goes for your namesake, but DMike has possibly already read it?)

     

     
    The Median Isn't The Message

    Tex,

    Yes, I read it when you first pointed it out months ago. "The Message" stuck with me! Thanks for thinking of me. --David

  • dhs1963
    dhs1963 Member Posts: 513
    #8
    I am alive said:

    And all things are relative

    When I was first dx docs told me to stay away from the Internet. Too much of the info out there is woefully outdated. Every cancer is different. Medians are only medians. Of course they also don't want you to freak out on them. Generally, though, for good mental & emotional health you don't want to dwell on expiration dates. What is to be gained from it? They are not arbitrary. Instead of enjoying today -or tomorrow, or next week, or next year - that preoccupation will only put you in a dark, worrisome place, over which you have no control. One day I counted all the family & friends who have died during the eight years I have been dealing with kidney cancer and I was astounded - I came up with nine. Only one of whom had cancer. Bottom  line: you just never know. So why not assume you will be an active warrior for many, many years?  Visualize yourself at your daughter's college graduation or wedding and just choose to move forward, cancer be damned. Spit in its eye! Enter 2013 with your boxing gloves on! 

    This is true, if your Dr understands your disease

    There are different types of kidney cancer, and they are not the same.  For example, my Primary Care Physician does not believe in familial kidney cancer.  When I was 40, mentioned the relatives that had RCC, he should have ordered a scan.  Instead, he explained it was an environmental disease, and I did not have the risk factors.  Had I read about it on line, I would have had information.  My cancer would have been identified earlier, possibly 8 years earlier (if I hat the tumor then).   Information about the disease is good, but the mortality rates are dated.  

  • Limelife50
    Limelife50 Member Posts: 476
    #9
    dhs1963 said:

    Yes, Bad is relative....

    Thank you TW! 

    THE Dead Pool

    I  know having cancer sucks and we can go on and on but it gets to a point where we all have to accept our situation.Boo hooing  is only going to make us feel worse and  our cancer could really care less.You could talk about stats all day long but their are so many variables with this disease that size grade subtype age of patient over all health genetics and on and on so what i am getting at is deal with it whining sometimes helps us to cope but at the same time none of us are special so rather than complain why not be thankfull for what we have and by the way  MERRY CHRISTMASS TO ALL!!

  • Limelife50
    Limelife50 Member Posts: 476
    #10
    dhs1963 said:

    Yes, Bad is relative....

    Thank you TW! 

    THE Dead Pool

    I  know having cancer sucks and we can go on and on but it gets to a point where we all have to accept our situation.Boo hooing  is only going to make us feel worse and  our cancer could really care less.You could talk about stats all day long but their are so many variables with this disease that size grade subtype age of patient over all health genetics and on and on so what i am getting at is deal with it whining sometimes helps us to cope but at the same time none of us are special so rather than complain why not be thankfull for what we have and by the way  MERRY CHRISTMASS TO ALL!!

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