Question- how do you count years of survival?

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Koreysue
Posts: 258
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
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

claudine
Posts: 809
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 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Koreysue
Posts: 258
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.
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Deb m
Posts: 558
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: 258
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:
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

kandj
Posts: 314
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, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

radnyc
Posts: 446
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 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

claudine
Posts: 809
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 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

justin case
Posts: 4269
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: 438
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Koreysue
Posts: 258
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)
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

boxhill
Posts: 789
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 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

User avatar
CRguy
Posts: 10473
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
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Koreysue
Posts: 258
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.
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Koreysue
Posts: 258
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!
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan


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