Question- how do you count years of survival?

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Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Question- how do you count years of survival?

Postby Koreysue » Fri Oct 18, 2019 11:29 am

I’ve been wondering...
How do you guys (or your doctors) count survival years?
My surgery was July of 2017, and was supposedly curative. I then had 6 months of chemo (“to be sure”).
I would think the count starts the day of surgery, but my onc said he counts from the last day of chemo.
Wouldn’t that method apply to cancers that were being shrunk/destroyed by the chemo, not removed by completely by surgery first ?
Just curious what you guys think, or what your oncologists have said.

Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Question- how do you count years of survival?

Postby Claudine » Fri Oct 18, 2019 11:37 am

I personally count from the day of diagnosis... But that's just me, not something "official" from the oncologist or medical literature.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Fri Oct 18, 2019 11:47 am

Thanks for your reply, Claudine. True- we start fighting on diagnosis day, for sure.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

Deb m
Posts: 517
Joined: Tue Jan 14, 2014 10:08 am

Re: Question- how do you count years of survival?

Postby Deb m » Fri Oct 18, 2019 2:09 pm

We were told by our oncologist at MDA that the clock starts the day of surgery if all visible know cancer was removed. If not all the cancer was removed, then it starts after chemo, when you obtain a clean scan. I guess that would determine years of remission. Years of survival, what your asking, would start the day your officially diagnosed.

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Fri Oct 18, 2019 2:29 pm

Thanks Deb,
Yes I suppose I do mean remission.
I’d like to start the count at surgery, so maybe I will just ignore my onc who always goes by last day of chemo. I like my way better :lol:
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Question- how do you count years of survival?

Postby kandj » Fri Oct 18, 2019 2:38 pm

I have always looked at Overall Survival rates being from day diagnosed. So for DH he has passed the 4yr OS mark. For NED I count the day no scans or tests show cancer. So for his current bout, it would be NED since Nov. 2018. He has been NED before twice, with the clock restarting with each new met seen. But he has been battling this bitch for a little over 4 years. :)
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

radnyc
Posts: 412
Joined: Tue Apr 06, 2010 6:32 pm

Re: Question- how do you count years of survival?

Postby radnyc » Fri Oct 18, 2019 3:09 pm

From day of surgery which rendered you cancer free
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Question- how do you count years of survival?

Postby Claudine » Fri Oct 18, 2019 3:21 pm

Two different things here - I agree with kandj, OS is different from NED/in remission. Because of his spinal tumor, my husband will probably never be considered NED. But he's very much alive :D
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

justin case
Posts: 4258
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Question- how do you count years of survival?

Postby justin case » Fri Oct 18, 2019 3:34 pm

I count from my last treatment, the 12th round after surgery and port removed . 7 yrs and counting.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Beckster
Posts: 399
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Question- how do you count years of survival?

Postby Beckster » Sat Oct 19, 2019 4:53 am

My oncologist from MDA is using the surgery date as the beginning of my 5 year countdown. Surgery was November 2016. Even though I finished chemo in June of 2017, he has me at the end of 3 years NED as November 2019.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17, 11/19 :D

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Sat Oct 19, 2019 9:58 am

Beckster wrote:My oncologist from MDA is using the surgery date as the beginning of my 5 year countdown. Surgery was November 2016. Even though I finished chemo in June of 2017, he has me at the end of 3 years NED as November 2019.


Ok yea.. this makes sense to me. Not sure why my doc said end of chemo. I’d just like to know where I stand, and I like the sound of 2 years and 4 months. 8)
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

boxhill
Posts: 404
Joined: Fri Apr 06, 2018 11:40 am

Re: Question- how do you count years of survival?

Postby boxhill » Sat Oct 19, 2019 5:30 pm

I think that "survival" has to be from day of diagnosis. Which is totally different from "progression-free survival" or "NED" or whatever. None of the other alternatives suggested really make any sense. It can't be surgery, since some people have treatment with chemo and/or radiation before having surgery--or never have surgery--and yet they are definitely "surviving." End of chemo makes no sense since some people never get off of chemo, or never have chemo and yet they are "surviving."

For me, diagnosis day is the same as surgery day, so that's easy. I've been "surviving" since 3/17/18 so far. Luck of the almost-half Irish. :lol:
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question- how do you count years of survival?

Postby CRguy » Sat Oct 19, 2019 7:28 pm

Not to throw a monkey wrench into this discussion topic
( we have had this discussion a few times over the years :shock: :mrgreen: )
AND various centers and studies will have SPECIFIC definitions of their "survivor" terms and conditions when publishing stats etc.

BUTT .... you just KNOW there is at least one !!!! I offer the following :

1. CRC tumors tend to be slower growing ... SO when diagnosed you have probably been surviving with having cancer for at least a few years

2. diagnosis, whether by confirmed pathology from a biopsy or surgery, imaging, clinical "impression" gives a starting point from which most folks would agree "You have THIS and you are surviving with it."

3. Surgical removal of tumor = cancer is gone, so now you are surviving this stuff.

4. During chemo, chemo/rad and other modalities given prior to surgical tumor removal = we know you have this BUTT ...
NOW you are surviving during this whole process

5. diagnosis, chemo, chemo/rad, surgery, healing, NED = all done / good to go = you are now surviving AFTER the whole process


personally, my take is with the date of confirmed diagnosis ...you KNOW you have cancer and moving forward
EVERYTHING you do ...IS as a SURVIVOR.

Prior to a diagnosis you are a patient who may have suffered some minor-major issues.
AFTER a definitive diagnosis you ARE A CANCER SURVIOR !!!

JMO.

I do see the rationale of using a curative surgery date, where one exists ... BUTT ...
there are many folks who do not get to curative surgeries and still survive,
many who go through all kinds of treatments and still survive.

BUTT .... BUTT ...
everyone I have known, HAS had a diagnosis date

again JMO

Cheers all
CRguy on the Journey
Still surviving as best I can

HARMONY !
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Sat Oct 19, 2019 9:39 pm

CRguy wrote:Not to throw a monkey wrench into this discussion topic
( we have had this discussion a few times over the years :shock: :mrgreen: )
AND various centers and studies will have SPECIFIC definitions of their "survivor" terms and conditions when publishing stats etc.

BUTT .... you just KNOW there is at least one !!!! I offer the following :

1. CRC tumors tend to be slower growing ... SO when diagnosed you have probably been surviving with having cancer for at least a few years

2. diagnosis, whether by confirmed pathology from a biopsy or surgery, imaging, clinical "impression" gives a starting point from which most folks would agree "You have THIS and you are surviving with it."

3. Surgical removal of tumor = cancer is gone, so now you are surviving this stuff.

4. During chemo, chemo/rad and other modalities given prior to surgical tumor removal = we know you have this BUTT ...
NOW you are surviving during this whole process

5. diagnosis, chemo, chemo/rad, surgery, healing, NED = all done / good to go = you are now surviving AFTER the whole process


personally, my take is with the date of confirmed diagnosis ...you KNOW you have cancer and moving forward
EVERYTHING you do ...IS as a SURVIVOR.

Prior to a diagnosis you are a patient who may have suffered some minor-major issues.
AFTER a definitive diagnosis you ARE A CANCER SURVIOR !!!

JMO.

I do see the rationale of using a curative surgery date, where one exists ... BUTT ...
there are many folks who do not get to curative surgeries and still survive,
many who go through all kinds of treatments and still survive.

BUTT .... BUTT ...
everyone I have known, HAS had a diagnosis date

again JMO

Cheers all
CRguy on the Journey
Still surviving as best I can

HARMONY !


Thanks for your reply CRguy.
I agree with everything stated above, I guess I didn’t word it right, because I know we are all survivors from day 1! I just get hung up on numbers.. fixated... (diagnosed with ocd)
Ksue
Last edited by Koreysue on Sat Oct 19, 2019 9:53 pm, edited 1 time in total.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Sat Oct 19, 2019 9:49 pm

boxhill wrote:I think that "survival" has to be from day of diagnosis. Which is totally different from "progression-free survival" or "NED" or whatever. None of the other alternatives suggested really make any sense. It can't be surgery, since some people have treatment with chemo and/or radiation before having surgery--or never have surgery--and yet they are definitely "surviving." End of chemo makes no sense since some people never get off of chemo, or never have chemo and yet they are "surviving."

For me, diagnosis day is the same as surgery day, so that's easy. I've been "surviving" since 3/17/18 so far. Luck of the almost-half Irish. :lol:


Thanks for the reply boxhill,
That Irish has to help!
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2


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