When do you start counting?

ThomasH
ThomasH Member Posts: 106 Member
in Colorectal Cancer #1

I know, this is going to sound like a really stupid question, but when do you start counting how long you have survived? Do you start when you first had your symptoms, when you were Dx'd, when you had your last treatment, when you get a NED?

Seems silly, but I don't know when I should "Start the clock" so to speak. What do you do?

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #2
    I suppose it's to each his

    I suppose it's to each his own. I count from the day I was diagnosed but obviously the cancer was there long before. I wish I knew how long before, I'm really curious. If I were ever able to say I'm NED I'd be counting fromt the last time I had a result that was not NED, I think.

    Jan 

  • abrub
    abrub Member Posts: 2,174 Member
    #3
    I started counting from my diagnosis

    NED for 9 years, now I'll never be NED again.  We know I have microscopic cancer.  However, at this point, I consider myself to be a 10 year survivor.  Dx'd April, 2007.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #4
    Everyone does it their own way

    I count my survival from the last Cancer episode, which for me, was my liver ablation April 2014.  If I hadn't had the liver met, I would have counted it from my last treatment. 

    Its a personal thing, and you get to do exactly what you want, because at the end of the day, its you who are celebrating the most. 

    And its not at all a silly question. Its a great question and I thank you for asking it. 

    Tru

  • gsmith53
    gsmith53 Member Posts: 27
    #5
    Not the best Valentine

    I got the results of a CT on the afternoon of Valentines Day 2017, was in the emergency room that evening, and admitted that night, to prep for a surgical resection, removing 12" of the Sigmoid.

    So, from now on, every Valentines Day becomes an aniversary of survival.

  • ThomasH
    ThomasH Member Posts: 106 Member
    #6
    gsmith53 said:

    Not the best Valentine

    I got the results of a CT on the afternoon of Valentines Day 2017, was in the emergency room that evening, and admitted that night, to prep for a surgical resection, removing 12" of the Sigmoid.

    So, from now on, every Valentines Day becomes an aniversary of survival.

    No, that one is not the best

    Any day you get that news is going to be a bad day, but on a good note, every Valentine's day from here on out is going to be extra sweet.

    Sorry, it's a habit. I reflexively look for positive things. Everything about Cancer and its treatment sucks, except the part where you beat it. It is possible to get there, and I sincerely hope you do.

    Thomas

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    edited June 2017 #7
    Counting

    Most people here including my doctor refer to my survival being based on my original diagnosed date.

  • Cindy225
    Cindy225 Member Posts: 172 Member
    #8
    Finished 12 Rounds of Chemo Last Friday!

    Yay!  Getting CT scan on Monday and results on Wednesday. Praying, hoping for the beginning of NED!  

  • ThomasH
    ThomasH Member Posts: 106 Member
    edited June 2017 #9
    abrub said:

    I started counting from my diagnosis

    NED for 9 years, now I'll never be NED again.  We know I have microscopic cancer.  However, at this point, I consider myself to be a 10 year survivor.  Dx'd April, 2007.

    So sorry to hear about that!

    So does it mean that it is easier or harder to treat when it is microscopic? Are you scheduled for another round of chemo, or are you taking anti-angiogenic meds to keep it from growing? 

     

  • abrub
    abrub Member Posts: 2,174 Member
    #10
    ThomasH said:

    So sorry to hear about that!

    So does it mean that it is easier or harder to treat when it is microscopic? Are you scheduled for another round of chemo, or are you taking anti-angiogenic meds to keep it from growing? 

     

    No more chemo

    Right now, it's just watch and wait to see if it develops into something larger.  Mine is very slow growing.  There is no discussion of meds to slow its growth.  We considered radiation/brachytherapy, but decided that in my particular case the known risks were not worth the unknown benefits.

  • blessed39
    blessed39 Member Posts: 90 Member
    #11
    In remission for several years

    Dear ThomasH, I wrote my story about my stage four diagnoses entitled "How I Beat Stage Four Colon Cancer"

    any my experience with the big "C." I hope it encourages and blesses you. blessed39

  • gsmith53
    gsmith53 Member Posts: 27
    #12
    ThomasH said:

    No, that one is not the best

    Any day you get that news is going to be a bad day, but on a good note, every Valentine's day from here on out is going to be extra sweet.

    Sorry, it's a habit. I reflexively look for positive things. Everything about Cancer and its treatment sucks, except the part where you beat it. It is possible to get there, and I sincerely hope you do.

    Thomas

    Valentines Day

    Agreed thomas. Thanks

  • gsmith53
    gsmith53 Member Posts: 27
    edited June 2017 #13
    Cindy225 said:

    Finished 12 Rounds of Chemo Last Friday!

    Yay!  Getting CT scan on Monday and results on Wednesday. Praying, hoping for the beginning of NED!  

    finished

    yay for you. Hope for NED

  • NewHere
    NewHere Member Posts: 1,428 Member
    #14
    I Count From Last Time Something Cancer Found

    But not sure of the rules as others said.  I had a lung met removed in September, so I am kind of counting since then, though bloodwork and scans indicate I have cancer in all likelihood and just waiting for biopsy in a couple of weeks.  And during chemo the thing that turned out to be a met changed size, so I was never really believing NED.  But I have survived over two and a half years since the first warning sign on a scan which indicated a possible issue (which took a couple of weeks to confirm due to warning found right before Christmas) so I go with that.  Doctors think it was fast growing and about a year before found.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #15
    NewHere said:

    I Count From Last Time Something Cancer Found

    But not sure of the rules as others said.  I had a lung met removed in September, so I am kind of counting since then, though bloodwork and scans indicate I have cancer in all likelihood and just waiting for biopsy in a couple of weeks.  And during chemo the thing that turned out to be a met changed size, so I was never really believing NED.  But I have survived over two and a half years since the first warning sign on a scan which indicated a possible issue (which took a couple of weeks to confirm due to warning found right before Christmas) so I go with that.  Doctors think it was fast growing and about a year before found.

    There are no rules.....

    It's Cancer. There are no rules so we make them up as we go.

    Tru

  • ThomasH
    ThomasH Member Posts: 106 Member
    #16
    blessed39 said:

    In remission for several years

    Dear ThomasH, I wrote my story about my stage four diagnoses entitled "How I Beat Stage Four Colon Cancer"

    any my experience with the big "C." I hope it encourages and blesses you. blessed39

    It's a great read

    I did have an oportunity to read your story, and I enjoyed it very much. Thanks for writing it!

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited June 2017 #17
    I count both the time from

    I count both the time from first diagnosis[9 3/4 years now] and the time from the last surgery that removed the known tumor[2 3/4 years]. One is my time as a survivor and the other is my NED time........................................Dave

  • DD3
    DD3 Member Posts: 136 Member
    #18
    Trubrit said:

    There are no rules.....

    It's Cancer. There are no rules so we make them up as we go.

    Tru

    I

    like that answer Tru.  Just about perfect.

    During our last meeting with my wife's oncologist he mentioned some "new" guidelines the NCCN issued.  Not that they write the "bible" on all of this.  However, they now say (according the the doc) you are a survivor when you are diagnosed.  Huh?

    I like your answer better though.... Laughing

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited June 2017 #19
    It's Always Different

    It's always different for patient and especially the doctors.  My oncologist said it was from diagnosis date, but my treatment started two months later so I'm thinking that might have something to do with it.  But it was required that 5 years of monitoring was done and then declared that I'm cleared from there and handed over to just primary doctor.  I've had so many doctors since then so have many monitoring my progress. 

    Kim

  • Phil64
    Phil64 Member Posts: 838 Member
    #20
    Since diagnosis

    The five year survival rates (statistics) count from diagnosis. For NED I count from the point where I became NED. If I had a recurrence I didn't consider myself NED. And when I was NED again (e.g. Beat the recurrence) I start counting NED from the new date. 

    So in my case I was first diagnosed Stage IV colon cancer in April 2012.  And NED since my last surgery on 12/5/2014. 

    Therefore I would say I'm a five year survivor, NED for 2 1/2 years.

    :-)

  • ThomasH
    ThomasH Member Posts: 106 Member
    edited June 2017 #21
    Thanks for all the replies

    I appreciate the feedback everyone, that gives me a better idea of where everyone stands.

    Every day is a new personal high score for me. Laughing

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