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When do you start counting?

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

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?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

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

abrub's picture
abrub
Posts: 2175
Joined: Mar 2010

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.

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

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's picture
abrub
Posts: 2175
Joined: Mar 2010

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.

gsmith53
Posts: 27
Joined: May 2017

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's picture
ThomasH
Posts: 104
Joined: Jun 2016

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

gsmith53
Posts: 27
Joined: May 2017

Agreed thomas. Thanks

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

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

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

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

gsmith53
Posts: 27
Joined: May 2017

yay for you. Hope for NED

blessed39's picture
blessed39
Posts: 91
Joined: Dec 2016

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

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

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

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

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's picture
Trubrit
Posts: 5493
Joined: Jan 2013

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

Tru

DD3's picture
DD3
Posts: 134
Joined: May 2013

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

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

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

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

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's picture
Phil64
Posts: 838
Joined: Apr 2012

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's picture
ThomasH
Posts: 104
Joined: Jun 2016

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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