What date do you count from?

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dlm217
dlm217 Member Posts: 81

I had surgery in 11/11, Chemo ended in 5/12, radiation ended in 7/12 and I started Tomoxifan in 5/12 which I will take for 5 years.  So do I count from Surgery? Would that then make me just 2 years out?  After all this time and it all still confuses me.

Thanks.

Comments

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    I've seen it done both ways: counting from your surgical date and/or counting from the date of your last treatment.  I don't think there is a consensus...

  • Momine
    Momine Member Posts: 7,859
    edited December 2013


    My doc counts from surgery.

  • wintersocks
    wintersocks Member Posts: 922
    edited December 2013


    dim217,


    my doc also counts from surgery (which will be August for me) I asked her this question directly.


    Hello Momine!

  • MaxineO
    MaxineO Member Posts: 555
    edited December 2013


    Those whose docs count from surgery, are they your surgeons?


    I think counting from date of diagnosis works best. That provides consistency among patients since some have surgery first, others have chemo first, etc. So yes, I would say you are two years out.


    It's like when they count your pregnancy from the first date of your last period...even if you are irregular and ovulate at day 20 or more. Consistency for their stats :)

  • wintersocks
    wintersocks Member Posts: 922
    edited December 2013


    MaxineO,


    Yes, she is my surgeon. I think her view is that is when the cancer is removed. As a result I can count 2 years out in Aug and not Feb when I was dx.


    I think it is all very confusing isn't it? but for me i like and respect her a lot. so I go with her view. It's hard cos I am so tempted to count Feb - as it is just around the corner.

  • MmeJ
    MmeJ Member Posts: 167
    edited December 2013


    If it is of any value to you, studies measure from date of diagnosis for the reason MaxineO stated.


    We can measure whatever way makes us feel best.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    I had always counted from date of diagnosis, but I didn't know why. (It seems longer that way, too!)

  • dlm217
    dlm217 Member Posts: 81
    edited December 2013

    It is confusing.  If we count from the date of diagnosis then that really isn't x amount of years NED.  I was diagnosis in September but did not have sugery until November.  I did not have any treatment from diagnosis until surgery.  I had chemo after surgery.  I get confused on where they count for the 5 year mark.  Are we counting the 5 years based on my tamoxifan use? From surgery? or completion of treatment?  I have my follow up on 12/23 I am going to ask my onocologist.  I wish i would have thought to ask my surgeon when I saw her in November.

  • AgentMo
    AgentMo Member Posts: 72
    edited December 2013


    Oh yes, please report what your doctors tell you - I wanted to know this for years.


    Maybe it would be a good idea to ask how survival times in studies are measured because this is after all where the statistics come from. And if somebody could ask whether there is a difference between the starting date if somebody is doing neoadjuvant treatment and the starting date if somebody is doing adjuvant treatment, this would be grand.


    I am pretty sure you don't take five years of tamoxifen before starting to count - but with surgery, chemo and radiation I am just very confused. For the record, my onc said the counting starts after completion of chemo, which is quite a lot later if you had adjuvant treatment like me. But I am not entirely convinced she knows this very detail.


    Thanks in advance for any answer.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    My onc said it is figured 5 years from date of DX.  I'll go with that since it's coming up next month for me!!  But I can see how confusing this all is and I would have thought it meant 5 years from either after surgery, chemo or radiation.  Am going to ask in 3 months when I see her next. 

  • dlm217
    dlm217 Member Posts: 81
    edited December 2013


    I would think if you are taking tamoxifan or something it would be 5 years from that date.  I would think I have to have follows with my medical oncologist at least until I finish taking it.  I am not sure where we go from there.  I am definitely asking her all of this on Monday.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited December 2013

    My dr uses dx date so that's what I use.

  • Katarina
    Katarina Member Posts: 386
    edited March 2014

    Good Question.

    It just occurred to me the other day, when I started counting for the first time, that my time was from dx versus and not end of treatment/NED. For some crazy reason I was counting from NED date. 

    I'm 3 years this month.  Yeah!

    Hugs

  • Momine
    Momine Member Posts: 7,859
    edited March 2014

    My doc counts from surgery, which for me was 3.5 months after DX. Right now, I am 2 full years out from end of treatment, and 2.5 years from surgery.

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