Can't Find Prognosis

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Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    current tx absolutely....prognosis no way !

    Hello Ron,

    I have found this site very enlightening.  You see these folks keep us moving in a positive manor.  Most prognosis's are not worth the powder to blow them up with.  Seriously.  I have a different dx (adcc) and 5 yrs out is good, and down hill from there.  NOT !  I have linked with survivors that are now 20 yrs out.  Yes, make proper decissions on tx's that will combat this disease.  And focus on getting better.  We'll be here to listen, and encourage you !   Katie

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Too late... you looked! ;)

    Hi Ron,

    You , like I,  and probably everyone else facing cancer, read about everything you could looking for information and scared the bejeebers out of yourself.

    Reading your post, the one thing that struck me was the docs being evasive. Where are you going for diagnosis /treatment? Is it a Comprehensive Cancer Center? Are you seeking a 2nd opinion? A key aspect in getting through this brutal battle is confidence in your "team". The docs should all be in agreement with treatment and prognosis. I find it unusual that they didn't look into HPV as it's an increasingly prevelent factor in H&N cancers. It also bodes well for treatment and prognosis.

    The thing is with prognosis statistics is they are statistics and don't take into account the indivudulity of the diagnosis and treatment response. I've read thos same stats and given the alternative to treatment, I'll take the treatment. 

    Here's a link that rates the top cancer centers. http:// health.usnews.com/best-hospitals/rankings/cancer  
    As an example. I sought a 2nd opinion at Johns Hopkins (2 hours away and #4 overall, #1 for head and neck cancer). My local facility in which I had several issues with, wasn't even a certified cancer center! 

    This is a great site and group of folks. 

    Positive thoughts and prayers

    "T"

     

  • Ron Silver
    Ron Silver Member Posts: 94
    Thank you for all of the very

    Thank you for all of the very kind and informative responses.    I am in a "better place today."  My initial posts were, after reading them today, very negative.  Time for me to finish reading all the info on this forum.  In response to some questions, I don't know what a second opinion will give me.  The diagonsis is accurate (can see and feel the tumor).  From what I have read on this forum, the prognosis issue is really on non-issue and it is self-defeating to focus on it.   Yes, I have a peg tube and I am using it in combo with mostly soft and liquids by mouth.  Again, I apoligize for interjecting negative vibes on such a postive focused forum.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Thank you for all of the very

    Thank you for all of the very kind and informative responses.    I am in a "better place today."  My initial posts were, after reading them today, very negative.  Time for me to finish reading all the info on this forum.  In response to some questions, I don't know what a second opinion will give me.  The diagonsis is accurate (can see and feel the tumor).  From what I have read on this forum, the prognosis issue is really on non-issue and it is self-defeating to focus on it.   Yes, I have a peg tube and I am using it in combo with mostly soft and liquids by mouth.  Again, I apoligize for interjecting negative vibes on such a postive focused forum.  

    You're Good...

    It's easy to get wrapped around the wheel..., hell you're fighting for your life.

    When I was first told you have  cancer..., all I could think of was pale, frail, no hair, washed out people that whither away to nothing an die... That is far from the truth.. I would go to chemo, and they were people there with laptops, cell phones, etc..., that had only stopped in to get chemo during their work day... I'm like "what the hell", I thought this s.hit killed you..., LOL..

    Like I said before, timing is everything... If you have to have cancer, this is the time for it...

    Don't worry about getting down, we all do..., just come on here and someone will be happy to slap you around a little and back into submission...., "you must comply, LOL"..

    Best,

    John

  • phrannie51
    phrannie51 Member Posts: 4,716

    Thank you for all of the very

    Thank you for all of the very kind and informative responses.    I am in a "better place today."  My initial posts were, after reading them today, very negative.  Time for me to finish reading all the info on this forum.  In response to some questions, I don't know what a second opinion will give me.  The diagonsis is accurate (can see and feel the tumor).  From what I have read on this forum, the prognosis issue is really on non-issue and it is self-defeating to focus on it.   Yes, I have a peg tube and I am using it in combo with mostly soft and liquids by mouth.  Again, I apoligize for interjecting negative vibes on such a postive focused forum.  

    Ron...there isn't one person here

    who didn't come in scared....mostly from reading the internet articles on our diseases (it's so natural to want to find out more).  Don't worry about negative vibes, everybody feels that way some times....natural too.  You just hang around us and we'll keep you up and looking forward to the end of treatment and the beginning of healing....

    p

  • ditto1
    ditto1 Member Posts: 660

    Thank you for all of the very

    Thank you for all of the very kind and informative responses.    I am in a "better place today."  My initial posts were, after reading them today, very negative.  Time for me to finish reading all the info on this forum.  In response to some questions, I don't know what a second opinion will give me.  The diagonsis is accurate (can see and feel the tumor).  From what I have read on this forum, the prognosis issue is really on non-issue and it is self-defeating to focus on it.   Yes, I have a peg tube and I am using it in combo with mostly soft and liquids by mouth.  Again, I apoligize for interjecting negative vibes on such a postive focused forum.  

    PROGNOSIS FOR LIFE?

    This is a great site and everyone has touched on most of what you need to hear.  I  had Base of Tongue IV with swollen lymphnodes.  I was lucky no surgery, 32 rads, 2 cisplatin chemo and 9 erbitux chemos,  NED in Jan 13, dx in March 12.  I had some rough times and these folks came to my rescue more times than I can count.  They never thru me off the bus they just brought warm blankets.  I managed to drive myself to 90% of my treatments even though I either had my wife or Emily my grandbabies mother with me.  Easy no doable yes.  I also use a wheelchair from polio and right leg amputation to add to the fact that God blessed me to manage to function thru the whole process. But back to the point of prognosis, we all have our scanaxiety which shows we want to keep the beast in its grave, but worry he may be back.  How ever we all have our destiny to meet our maker so the prognosis is we will all die, but with a little luck it will not be from the BEAST and be many years down the road, Skiffins got fishing to get done, Tim has an out house to build , we all have living to do.  So theres a STAT we can all agree on.  Good luck you will do fine and God Bless you and your family.  One day at a time and today we are alive.

  • Billie67
    Billie67 Member Posts: 898
    ditto1 said:

    PROGNOSIS FOR LIFE?

    This is a great site and everyone has touched on most of what you need to hear.  I  had Base of Tongue IV with swollen lymphnodes.  I was lucky no surgery, 32 rads, 2 cisplatin chemo and 9 erbitux chemos,  NED in Jan 13, dx in March 12.  I had some rough times and these folks came to my rescue more times than I can count.  They never thru me off the bus they just brought warm blankets.  I managed to drive myself to 90% of my treatments even though I either had my wife or Emily my grandbabies mother with me.  Easy no doable yes.  I also use a wheelchair from polio and right leg amputation to add to the fact that God blessed me to manage to function thru the whole process. But back to the point of prognosis, we all have our scanaxiety which shows we want to keep the beast in its grave, but worry he may be back.  How ever we all have our destiny to meet our maker so the prognosis is we will all die, but with a little luck it will not be from the BEAST and be many years down the road, Skiffins got fishing to get done, Tim has an out house to build , we all have living to do.  So theres a STAT we can all agree on.  Good luck you will do fine and God Bless you and your family.  One day at a time and today we are alive.

    Please!
    Do not think twice about being negative, I don't see it like that at all. Besides every single one of us on here has been there, is there or will be there so we get it. You were simply questioning all the info you've been given from the doctors. It's all good and now you are part of a family that you can say anything to and we understand.
    Glad today you feel better about things tho, that's always a plus.

    Billie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Billie67 said:

    Please!
    Do not think twice about being negative, I don't see it like that at all. Besides every single one of us on here has been there, is there or will be there so we get it. You were simply questioning all the info you've been given from the doctors. It's all good and now you are part of a family that you can say anything to and we understand.
    Glad today you feel better about things tho, that's always a plus.

    Billie

    Hello Ron and welcome...

    I'm probably the more annoying one ...I too like to crunch numbers, know stats (it's too what I do for a living to some degree) and I answer to owners / management companies and the only tools I have to work with are "past indicators" future predictoins" and you guessed it, "numbers and statistics"... :)

     

    Try taking a look at www.oralcancerfoundation.org ...forget google (lots of outdated info) ...  It is true you will go through the same treatments if you are HPV or not, but I do think you should find out if you are HPV. This site is great for advice as well ( as you have seen).

    Bottom line is life is great and worth doing whatever it takes to be around for it :) (opinion alert on that one).

    Keep us posted Ron.

    Tim