My restaging update... NOW WHAT?

just4Brooks
just4Brooks Member Posts: 980 Member
edited March 2014 in Colorectal Cancer #1
I emailed my cancer doctor and my surgeon about a restaging of my cancer after I read some restaging information on the board.

This is the repose from my chemo doctor

"JONATHAN A POLIKOFF MD Thu Oct 22, 2009 11:29 AM Signed
Stage is based on the original diagnosis only - hence Stage III.
The postop path only showed residual cancer in the mucosa which is excellent however."


This is from my surgeon

Yes, originally, you were T3N1 which is stage 3. After chemo/radiation, you were down staged to T1N0, which is stage 1"

Hope you are well

Sincerely,
Jennifer Khoe

So where do I get a answer? WHO has the right answer? So far I like the one from doctor Khoe.. Can anyone on the board help me with this?


Love ya guys
Brooks

Comments

  • kristasplace
    kristasplace Member Posts: 957 Member
    #2
    Totally confused
    I'm sorry, i'm just as confused as you are about this! I didn't know you could be downstaged. I've never heard anyone refer to their cancer that way. Unless they staged you before your surgery, and were wrong.

    Hope you're able to resolve the issue.

    Hugs,
    Krista
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    Here's the 'final answer'
    Stage is based on the original diagnosis only - hence Stage III.


    Brooks, I had no residual cancer after surgery / pre-chemo. That would not restage me to be a 0.
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #4
    Hi Brooks,if I were you,I
    Hi Brooks,if I were you,I would try not to be bothered by this too much.Anyway downstaging always means you had great response to chemo and radiation.My husband was also downstaging from stage2 to stage1 after chemo and radiation,but the adjuvant treatment is always based on the original diagnosis.Take care.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #5
    Fight for my love said:

    Hi Brooks,if I were you,I
    Hi Brooks,if I were you,I would try not to be bothered by this too much.Anyway downstaging always means you had great response to chemo and radiation.My husband was also downstaging from stage2 to stage1 after chemo and radiation,but the adjuvant treatment is always based on the original diagnosis.Take care.

    Thanks once again
    Okay.. so once a stage 3 I'll always be a stage 3 or NED

    Brooks
  • luv3jay
    luv3jay Member Posts: 533 Member
    #6
    just4Brooks said:

    Thanks once again
    Okay.. so once a stage 3 I'll always be a stage 3 or NED

    Brooks

    Or unfortunately, you can
    Or unfortunately, you can shoot up to stage 4 (hopefully not), but I don't think you can be downstaged. They just measure your response to chemo...but all in all, sounds like you had a great response! I'm stage 4 and I go in for my PET/CT next week for "restaging".

    -Sheri
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    How do you feel?
    Stage it that way.
    I guess it's like one's virginity.
    Once you lose it you can't get it back...
    (unless of course you go to the Virgin Islands for recycling)
  • coloCan
    coloCan Member Posts: 1,944 Member
    #8
    All the world's a stage
    Hey Brooks: I think whatever stage they rate us at the beginning is where we stand thereafter; changes in extent of cancer still around, size of tumor (if any remains),spread to lymph nodes or other organs,etc has no bearing on orignal stage.....Steve
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #9
    PhillieG said:

    How do you feel?
    Stage it that way.
    I guess it's like one's virginity.
    Once you lose it you can't get it back...
    (unless of course you go to the Virgin Islands for recycling)

    This is the fist day I have really thought I can beat this
    After everything said, Pill hit it again. Today is the FIRST day I have truly felt That I will beat this. Today I feel NED is soon to come. You guys are truly wonderful. Phill someday we'll have to do lunch. You are truly special

    Brooks
  • sfmarie
    sfmarie Member Posts: 602
    #10
    Stage I
    Woohoo! I vote for that. Marie
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #11
    Honestly Brooks, If we all
    Honestly Brooks, If we all knew what the future held, health wise, financially, family wise, etc... we probably would be discouraged or give up. All of us, even those who have never been ill, face an end to life. Like others have said, it might be a bus that takes us out. The trick is to live as if time is short and try to enjoy every minute. Maybe we have an 'up on' those who think they have forever. You'll spend wonderful, quality time with your kids and most probably will die an old man of 90, in your bed. You will never regret that special time you spent with your kids and lovely wife. Another man may live that same amount of time, but spend HIS hours trying to attain a higher position at work, a bigger home, more expensive car... all things that pass away.

    Maybe we ARE the lucky ones...
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #12
    Staging
    Oh my goodness, I posted it and it disappeared. Here goes again. My doctor first staged me in the beginning and never changed it. I don't think all doctors use the same wording with all of us. My doctor never told me that I was NED, she just told me that the scan was clear and looked good. All doctors to relay information the same to each patient, I guess that's why so many different doctors. I wish you could say stage 1 also, but I don't think it works that way :( Glad you are feeling better.

    Kim

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