Thoughts on Stage IV...

Please feel free to read, share your thoughts, your stories and connect with others!
Claudine
Posts: 432
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Thoughts on Stage IV...

Postby Claudine » Mon Sep 23, 2019 11:51 am

How many, upon hearing the stage IV diagnosis, went to their computer and googled "colorectal cancer stage 4 survival rates" then felt their heart drop to the pit of their stomach when they read "14% 5-year survival rate"? I sure did...
Yet it seems that this forum is seeing regular posts about stage 4 people being NED now, and having been so for many years.
I went back to the SEER figure and based on their data (2010-2015) half of the deaths occur within the first year, and 70% within the first two.
What I take from this is that if you make it past the first couple of years, your chances at longer term survival are higher - maybe those folks who don't reach that have been diagnosed too late, are much older, etc. Coupled with the medical research and advances focused on mCRC, this makes me feel a lot better than this dire 14% value!

Image
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Re: Thoughts on Stage IV...

Postby AmyG » Mon Sep 23, 2019 3:16 pm

I looked. Then I said oh hell no, I'm not dying. So far, so good.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

User avatar
Atoq
Posts: 387
Joined: Wed Oct 25, 2017 9:31 am

Re: Thoughts on Stage IV...

Postby Atoq » Mon Sep 23, 2019 3:26 pm

I of course looked at stats but is not really depending on me, so it is just to live as happy as possible while you can. Then you might be the lucky survivor.

I also agree with your considerations, but how high was the chance to get cancer at 45, given that I was not smoking, I was training and eating healthy food?

So for me if you give me 100 people I can make a statistic but being one it is either goes well or it doesn’t. In the meanwhile I will act as I am going to survive because then I feel happier. :D

All the best


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

Claudine
Posts: 432
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Thoughts on Stage IV...

Postby Claudine » Mon Sep 23, 2019 3:31 pm

Great attitude, you two! And yes, that's exactly my point - it's easy to get overwhelmed by a number, but really, it's just that, and doesn't take so many things into consideration!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

Amarie123
Posts: 47
Joined: Wed Nov 14, 2018 6:46 am

Re: Thoughts on Stage IV...

Postby Amarie123 » Mon Sep 23, 2019 3:52 pm

Yes I did exactly this and felt my heart sink as well. This forum is helpful to me as well seeing so many who have done well for many years. I believe that the survival rates are somewhat skewed in that they reflect patients who receive no treatment. I could be wrong but someone (though I can’t remember who) told me this a few months ago and I felt much more hopeful.

User avatar
CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: Thoughts on Stage IV...

Postby CRguy » Mon Sep 23, 2019 3:57 pm

The "stats" thing has always been the elephant in many rooms here :(

BUTT a long time ago ...
I decided that something was important enough to put into my ongoing signature here :
" my life is an ongoing totally randomized UNcontrolled experiment with N=1 ! "

Don't know if that is a philosphy, an attitude, a musing or just blind naivety :shock:
that is just my story and I am sticking to IT !!!!

Cheers and Harmony to ALL on the Journey
stats be damned :twisted:

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

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on Stage IV...

Postby stu » Mon Sep 23, 2019 4:31 pm

When I first googled it back in 2009 it was 6% !!! Really unpleasant reading so it is slowly going up !
I did think it was a narrow gateway to get through but I guess you are only ever a single statistic in the final analysis .

It was explained to me a large percentage of the stats contain very elderly patients who could not tolerate treatment .

I also noticed the first few years are often packed full of treatments and procedures but some people then get a break and it settles .

Let’s hope the stats continue to improve and maybe some kinder treatments too !!
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: Thoughts on Stage IV...

Postby boxhill » Mon Sep 23, 2019 10:03 pm

What I realized within hours after first looking at those stats was that "Stage IV" included everyone from someone like me, who was Stage IV because of a single 5mm liver met, to people who when diagnosed had significant mets to liver, lungs, spine, and brain,and sometimes even more. It really didn't make much sense to me to lump us all together, while making fine distinctions in stages I thru III. I also realized that treatments were available now that were not when people in the cohort used to derive the stats were diagnosed.
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
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes 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
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Thoughts on Stage IV...

Postby jsbsf » Mon Sep 23, 2019 10:40 pm

I feel like it’s a little unfair to give stats on stage IV alongside those for less advanced, since there is no upper limit. Stages I-III have upper boundaries and can have progressed only so much. Stage IV is “everything else”. I also feel very strongly that the numbers have to be at least 5 years old, or otherwise they wouldn’t know. Someone diagnosed next year should have a better long term outlook than someone from last year, and both should have better than 14%. There are advancements made in medicine every day.

A stage IV caught somewhat early has reason to be hopeful.

The statistics account for people who die for any reason within 5 years. They could have had diabetes or heart problems, or just have passed from natural causes. Some people aren’t candidates for surgery. I agree most stage IV are older, and have other health problems, in general.

It’s very stressful to be told you have stage IV, and I believe that many lose hope. Stress kills. It’s important to stay hopeful. I have a new perspective over the last 4 weeks. I feel this is a learning experience, and I have a far better grasp on what is important than I ever did before. I feel more human. People have always had to overcome challenges and hardships throughout history, and this is one for us.

I also realize life is short. I always felt this way, though. 100 years isn’t very long, and almost everyone alive now will be gone in 100 years. Even someone born yesterday. We just have to make the most of what we have.

I’m speaking as a caregiver, by the way. My mother lost her CRC battle in 2012, and husband is just starting his.

I don’t know what’s in store, but the people who post here make me feel so much better.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Thoughts on Stage IV...

Postby Rock_Robster » Mon Sep 23, 2019 11:04 pm

Thank you boxhill; you’ve explained in much better terms than I could something that’s been bugging me for ages.

The difference in survival stats for stages 1, 2 & 3 are actually fairly modest, then it’s a big jump to stage 4. However the stats for stage 4 after ‘curative’ resection are actually comparably closer to stage 3 (compared to unresected stage 4). So in my mind differentiating on resectability in staging or sub-staging would be a far more useful prognostic factor than say tumour depth (ie the difference between stage 1 & 2). I guess the issue is that resectability is not an objective measure that can be assessed radiologically, but comes down to the opinion, skill and aggressiveness of a particular surgeon.

There are also other factors that are not considered in staging such as MSI, cell differentiation and genomic mutation status that can be as prognostically useful if not more so than some of the stage or sub-stage distinctions.

The other issue is one of lead time bias. Because the survival stats are based on # of years after diagnosis, a patient who is diagnosed shortly after progressing to stage 4 will naturally live longer on average than one who has been stage 4 for a long time (not considering the extent of metastatic spread in this case).

Of course the fundamental issue is that you can’t take population average survival stats as prognostic for an individual. The average individual also has one breast and one testicle. As my onc says, your individual possible outcomes for being alive in 5 years are either 100% or 0%, and I can’t tell you which it will be until the time comes.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

NHMike
Posts: 2495
Joined: Fri Jul 21, 2017 3:43 am

Re: Thoughts on Stage IV...

Postby NHMike » Tue Sep 24, 2019 6:23 am

I have seen many survivors here as well but I've seen many that didn't survive. It may also be that Stage 4 patients benefit from this community in learning about resources and counsel that the typical patient wouldn't normally have easy access to.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

mymom
Posts: 1283
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Thoughts on Stage IV...

Postby mymom » Tue Sep 24, 2019 6:47 am

When I first googled for my mom I was like oh shit. I learned quickly to google for facts, treatment options, places like this to chat and stay away from straight up statistics. They are rarely correct- that and the weather channel.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

radnyc
Posts: 437
Joined: Tue Apr 06, 2010 6:32 pm

Re: Thoughts on Stage IV...

Postby radnyc » Tue Sep 24, 2019 8:23 am

When I first checked, 10 years ago it was 5%!! So the fact that is now 14% is a positive. As others have pointed out the problem is that they lump together people with a single, tiny met on the liver or the lung, with people who have cancer spread throughout their bodies, that’s why you get such low numbers. In fact I’ve seen studies where people with a solitary liver met have a much better chance of survival and cure than stage 3 patients that have only colon or rectum tumors but have multiple lymph nodes involved. The science is moving forward, but way too slowly for my taste.
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

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: Thoughts on Stage IV...

Postby stu » Tue Sep 24, 2019 9:15 am

NHMike wrote:I have seen many survivors here as well but I've seen many that didn't survive. It may also be that Stage 4 patients benefit from this community in learning about resources and counsel that the typical patient wouldn't normally have easy access to.


I think this point is really important . Over the last eight years I told any one who would listen to get a second opinion at a centre of clinical excellence. I can’t tell you the despair I felt as so many replied that they were happy with their oncologist. If my mum had not done so she would not be here now . She would have exhausted all chemo options years ago . So many factors but for some it’s seeking out windows of opportunity with skilled surgeons when you can . Her oncologist all those years ago did not think surgery was a good option . That thinking has only subsided in the last five years or so over here but they are all chalked up in the stats .
So many variables in each country .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: Thoughts on Stage IV...

Postby tater » Tue Sep 24, 2019 9:26 am

What a great topic. My wife was stage 4 at dx. Dr. Google depressed me and made it hard to understand and made me think of too many what "ifs". Forums like this one were good because it gave me hope when I say all of the stage fours say how many years they had been NED. Its interesting because until you think about it their is a lag in the data and every stage 4 is different just like every tumor is different where some treatments work and others it does not. I have been surprised by the about of people I run into that have cancer I'm not sure if it is an environmental thing or if I am just sensitive to the issue now and pay attention where it has personally impacted my life.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: chadwick1 and 2 guests