Gauging your cancer age

tommycat
tommycat Member Posts: 790 Member
in Colorectal Cancer #1
Hi everyone,
I just responded to a post by Pete and it got me thinking about how you define a NED status. I was dx in June 2009, started chemo/radiation and then had the big surgeries in Oct. 2009.
Currently I am NED, but would I say 3 years NED or 2 and a half years, since that's when the surgery was?
Just curious.
Much more important, I wish for EVERYONE here to have to ponder such a deep question....to wonder how long they've been NED.
Prayers for Good Health for all~
Tommycat

Comments

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #2
    It took me almost three years...
    just to get to NED, so am not sure what the best answer is here. I would probably start counting from your surgery date, but i don't know...three is a nice round number, so why not go with that? It's going to keep changing, anyway, won't be long before you'll be at 5, 10, or "forever"! Ann
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    Interesting
    My take is that you can't be NED at diagnosis. So I would opt for the surgery date if the doc felt they got it all. Otherwise, the first NED scan after treatment began might be the date.

    Regardless of what date we choose to use, it is a blessing just to be able to be around to wonder what date to use!

    Marie who loves kitties
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #4
    LOL Phil
    You crack me up as usual. Tori It's confusing isn't it, I would just say you had all your treatment in 2009, less confusing? Ok I'm confused lol.
  • joemetz
    joemetz Member Posts: 493
    #5
    tell the story... loud and over exaggerate!
    When in doubt, always over exaggerate the story and the timeline.

    It makes me feel better and everyone around me feel better.

    so... if i was telling your story, it would be 3 years the first time i tell it, and with each repeating of your timeline story... it would get better and better each time!!!


    LOL.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #6
    ned
    I have had people tell me they consider their NED date from surgery and some from the end of Chemo. I consider mine from the end of Chemo, because that was when my CEA was finally in the "Normal" status.

    Best Always, mike
  • taraHK
    taraHK Member Posts: 1,952 Member
    #7
    date of surgery
    My surgeon told me from date of surgery -- apparently that's how they do it for research studies, so that's what she follows.

    I say: pick whatever you want! Whichever gives you the longest time frame! :)

    Tara
  • steved
    steved Member Posts: 834 Member
    #8
    NED
    Tara is right that if you are comparing yourself to the stats then it is measured from the time of surgical resection. My sorry story is of being NED for 8 years post resection of a stage 3 rectal cancer before I was diagnosed with a recurrence- I have to admit I did start to 'relax' about it coming back after that magical five years passed. Just goes to show we shouldn't really base our individual situations on the stats from studies which use averages of large groups.

    Just enjoy every day- NED or not- and leave the counting to the statisticians.

    steve
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    steved said:

    NED
    Tara is right that if you are comparing yourself to the stats then it is measured from the time of surgical resection. My sorry story is of being NED for 8 years post resection of a stage 3 rectal cancer before I was diagnosed with a recurrence- I have to admit I did start to 'relax' about it coming back after that magical five years passed. Just goes to show we shouldn't really base our individual situations on the stats from studies which use averages of large groups.

    Just enjoy every day- NED or not- and leave the counting to the statisticians.

    steve

    Surgery
    I don't understand how surgery is the deciding factor.
    Many folks with stage IV CC have mets in various places so there are often multiple surgeries.
    I've had 5 surgeries and 4 ablations and I'm not NED.

    I think NED is determined by what it stands for, No Evidence of Disease.

    I do agree that just enjoy life and leave stats for horse racing...
    -p
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #10
    Better NED than DEAD
    Good question Tori...
    It's a very straightforward and easy question to answer.
    I'm still "in the womb" I since I'm not NED.

    Health is sometimes referred to as "the absence of disease" similarly, NED means No Evidence of Disease so when your Onc says "I see No Evidence of Disease", that would be the start of your NED-ness.

    -phil
    (there will be a quiz next Thursday...)
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #11
    TC
    I've never been NED per say...I have reached clear 'watch and wait' states at different spots....early on I got a year...later areas of concern and recurrence came much mor frequently

    When I first came here, NED was all the buzz....."all ned - all the time."

    I figured I was missing out, so I got my onc to say I was ned...a couple of months later, I recurred...end of ned...end for me ever using that word again, unless I make it out to the 5-year marker with clear scans, no recurrences....and even then...

    In essence, what all of us really are doing - is just watching and waiting - and hoping:) Time takes care of everything else.

    I define my length of time of going clear from the time that my report states that the scan is clear...I count that watch and wait time until I recur....in which case, the clock resets and starts back over.

    Now, T...here is something just for you...this scan I'm waiting on (if clear) would make 1 year clear for me...it's extremely significant, because I have never gone one year without something to watch since my very FIRST YEAR....and you know I just made my 8-years this month.

    In 4-months if my scans were clear then (assuming they are on this cycle), that would mark the longest time 'watching and waiting' for me....ever....in my entire 8-year fight.

    But, no matter which way the wind blows, I know that for me, I'll always just be watching and waiting....I would imagine if I could string out a couple of years more like you've been able to achieve (congrats btw), then I would begin to appreciate that perspective of putting a few miles behind cancer until I could no longer see it in my rear view mirror.

    So far, that dream has been elusive and I haven't been able to drink from that fountain - yet:)

    I'll leave you with this beautiful thought, T.....

    To quote William Shakespeare..."A rose by any other name would smell as sweet..."

    Translation: the names of things do not matter, only what things are.

    And what you are (besides being sweet) is clear for today...and today is all there ever will be - except for our hopes for another tomorrow.

    Thank you for signing the guestbook - it was very sweet and thoughtful of you to do so...and it made me feel warm to read what you had said.

    Love/Craig:)

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