A Bit Frustrated

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Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #22
    Buzzard said:

    I would and am treating it all as if it was Stage 4...
    I never want to look back and wish I had done something I haven't......Stage 5 is what you don't want...So, do whatever it takes as long as thats what you want.....Even if Folfox doesn't get it all, it will still kick most of its butt...I say the less indians you have surrounding the wagon the better off the wagon will end up....do whats necessary to satisfy yourself that you have done all you can to stop it....and then you'll be ok.....Love to ya Lori....Clift

    Clift
    I'm just hoping the FOLFOX kicks cancer's butt because it sure is kicking my butt. :)
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #23
    Annabelle41415 said:

    Sorry
    Don't have an answer for you. Just has to be hard going from 2 to 4 and seems like no one can decide what you are and how they want to treat it. Prayers are with you.

    Kim

    Thanks
    Kim, I really appreciate your prayers
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #24
    frustrating
    Hi Lori,

    Yes the number and what stage you are can be a frustration. I guess it may be up in the air until/unless they know what the suspicious spots on your bones are. I don't know if they do bone biopsies or not, since I don't have experience w/ bone mets.
    When I was diagnosed I was initially told I was a stage 2b (tumor had grown through bowel wall, but no lymph nodes were invol ed). In fact, no lymph nodes ever showed up as affected on a CT or a PET/CT scan in me anywhere until about a year and a half after my dx. But, just a week after my dx on a "routine" CT scan, multiple nodules showed up in both lungs and in my liver. So, I obviously was a stage IV, but they said I bypassed stage III (which is when it's in the lymph nodes). I was actually told they thought mine could have spread directly through my blood, bypassing the lymph system. Very weird- that's me, though- always have to do things the unusual way.It was about a year and a half later on a PET/CT scan that a hilar lymph node in my lungs was lighting and growing.
    I guess I wouldn't focus so much on whether it's stage III or IV now, but I know it's not easy not knowing.

    You take care and you are in my prayers,
    Lisa
  • cwork
    cwork Member Posts: 37
    #25
    lisa42 said:

    frustrating
    Hi Lori,

    Yes the number and what stage you are can be a frustration. I guess it may be up in the air until/unless they know what the suspicious spots on your bones are. I don't know if they do bone biopsies or not, since I don't have experience w/ bone mets.
    When I was diagnosed I was initially told I was a stage 2b (tumor had grown through bowel wall, but no lymph nodes were invol ed). In fact, no lymph nodes ever showed up as affected on a CT or a PET/CT scan in me anywhere until about a year and a half after my dx. But, just a week after my dx on a "routine" CT scan, multiple nodules showed up in both lungs and in my liver. So, I obviously was a stage IV, but they said I bypassed stage III (which is when it's in the lymph nodes). I was actually told they thought mine could have spread directly through my blood, bypassing the lymph system. Very weird- that's me, though- always have to do things the unusual way.It was about a year and a half later on a PET/CT scan that a hilar lymph node in my lungs was lighting and growing.
    I guess I wouldn't focus so much on whether it's stage III or IV now, but I know it's not easy not knowing.

    You take care and you are in my prayers,
    Lisa

    Thinking of you
    Hi Lori, I have thought about this alot since reading it, trying to think how I would feel. I think perhaps the thing that would bother me the most is the mental aspect of a change in my staging. I mean, what is going on inside of your body today is essentially the same as yesterday, so why does the number placed after the word "stage" affect you so much? I think if it were me I would have been clinging to that stage II label and in the back of my mind used that as encouragment to myself by saying "Well, at least I am not stage III or stage IV." Now by changing your stage the doc has taken from you that little source of comfort (for lack of a better word.) Perhaps it is more of a mental set back in that you have to re-evaluate the way in which you view your illness and your ability to cope with it. It also seems to me that sometimes stageing can be subjective in that what one doc may call one stage, another may place up or down from that. I totally understand how this news is disturbing to you, but hope you can mentally accept that it appears to be a number change more than a condition change. I don't know if this helps at all, or is totally off base. I really have thought about this since reading a couple of days ago and been concerned for you as I would hate for something like this to in any any way dim the bright light you are to me and so many others.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #26
    cwork said:

    Thinking of you
    Hi Lori, I have thought about this alot since reading it, trying to think how I would feel. I think perhaps the thing that would bother me the most is the mental aspect of a change in my staging. I mean, what is going on inside of your body today is essentially the same as yesterday, so why does the number placed after the word "stage" affect you so much? I think if it were me I would have been clinging to that stage II label and in the back of my mind used that as encouragment to myself by saying "Well, at least I am not stage III or stage IV." Now by changing your stage the doc has taken from you that little source of comfort (for lack of a better word.) Perhaps it is more of a mental set back in that you have to re-evaluate the way in which you view your illness and your ability to cope with it. It also seems to me that sometimes stageing can be subjective in that what one doc may call one stage, another may place up or down from that. I totally understand how this news is disturbing to you, but hope you can mentally accept that it appears to be a number change more than a condition change. I don't know if this helps at all, or is totally off base. I really have thought about this since reading a couple of days ago and been concerned for you as I would hate for something like this to in any any way dim the bright light you are to me and so many others.

    Cindy
    Thank you Cindy, I can tell that you really took some time with your post. No worries, I’m pretty tough to keep down. I've pretty much taken the attitude that you've described. Only difference is the climbing CEA which obviously means something is going on. I keep a spreadsheet and chart on my numbers (ha! anal) so I see it in 3D. But, the "worrisome" (never used that word before the radiologist and doctor started using it) spots and lymph nodes haven't changed in 5 months so that is a good thing, I think. Again, thanks for your input and thoughtfulness.

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