Prognosis question

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Basil
Posts: 122
Joined: Thu Mar 16, 2017 12:33 pm

Prognosis question

Postby Basil » Wed May 17, 2017 10:15 pm

I know there's probably no real answer for this but I'm early on and prognosis is constantly on my mind. I've had multiple biopsies and a flex sig with the cutter. Treated at MD Anderson in Houston. I have been diagnosed based of Ct and MRI as either t2n1m0 or t3n1m0. Surgey is scheduled Aug 2 and I'm taking FOLFOX in lieu of adjutant radiation.

Like most I'm obsessed with survival rates. I haven't gotten a straight answer but think I'm classified 3b with the suspicious nose. Onc says literature says 75% chance of no systemic recurrence. He also said that based on my particular condition (I don't know what that entails) plus age and other factors the recurrence chance is more likely 10-15% with full FOLFOX.

I want to believe the man but my inner septic is wrestling with numbers that favor me but not to the extent of 10-15 percent.

Thoughts?
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

[Ana & Alex]
Posts: 73
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Prognosis question

Postby [Ana & Alex] » Wed May 17, 2017 11:15 pm

Basil wrote:Like most I'm obsessed with survival rates.


I just got my path report and I'm so in the same place right now. N1 is not bad, that's why your oncologist gave you a better number maybe.

And age is know to be of advantage but I never read a study with specific numbers.
I'm hoping he's right, though :mrgreen:

Stay strong!
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

mpbser
Posts: 209
Joined: Wed Apr 19, 2017 11:52 am

Re: Prognosis question

Postby mpbser » Thu May 18, 2017 5:40 am

Here is a handy tool (actually this page links to two tools) to check the numbers for yourself:
https://www.mskcc.org/cancer-care/types ... tion-tools
Wife of 4/12/17 Dx age 45
5/19/17 - Lap left hemi
Adenocarcinoma
Tumor size: 5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
CEA: 1.4 Pre-op; 2.1 2 days Post-op
Tumor extension: Invasive through muscularis propria into pericolic fat
Proximal margin: >14 cm Distal margin: >14 cm Mesenteric margin: 3 cm
Lymphovascular invasion present
MSS/MSI-L
Lynch - unlikely; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2

SurvivorsSpouse
Posts: 64
Joined: Sun Nov 22, 2015 12:38 pm

Re: Prognosis question

Postby SurvivorsSpouse » Thu May 18, 2017 9:20 am

MD Anderson has a nomogram that includes 5-year conditional survival. In other words, if you survived x number of years, what is your prognosis for the next 5 years.This takes in to account the changing statistics as you move along the risk curve.

Good luck!!


http://cancerguide.org/scurve_conditional.html


https://www.mdanderson.org/for-physicia ... ators.html

Lee
Posts: 4974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Prognosis question

Postby Lee » Thu May 18, 2017 12:28 pm

I'm a 13 year survivor of rectal cancer stage IIIC. When I was diagnosed at that time, my 5 yr survival rate was anywhere between 30% to 60%. Believe me a lot of advancements have been made since then. Chemo options, immunotherapy, surgical options have changed the landscape on this cancer and more people are beating this cancer today. If you search Dr Google, please remember a lot of information out there is out of date.

MD Anderson is a top notch hospital. I have learned through the years, those who are actively involved in there treatment tend to have higher odds than someone is not actively involved.

The one piece of advice I will offer that has shown to help reduce a recurrence or spread by up to 50% is "exercise". Find something you enjoy and stick with it. Me I power walk 3 to 5 times weekly for an hr. Have been doing this for 12+ years now.

Good luck with your upcoming surgery.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Basil
Posts: 122
Joined: Thu Mar 16, 2017 12:33 pm

Re: Prognosis question

Postby Basil » Thu May 18, 2017 8:07 pm

Thanks for all the responses. I appreciate them.

On a clinical note, I have come to ththe conclusion that the steroids given with the oxa makes me uncharastically emotional, which is new to me. Guess this is the gift that keeps one giving (/shakes tingling hands)
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

Utwo
Posts: 125
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Prognosis question

Postby Utwo » Fri May 19, 2017 3:35 pm

Basil wrote:I want to believe the man but my inner septic is wrestling with numbers that favor me but not to the extent of 10-15 percent.
What is the meaning of "my inner septic"?
Is this a nick name for your colon?

Speaking of probability of recurrence I recall an old joke about a blonde.
Q: What is a probability of meeting a dinosaur on a street?
Blonde: 50%
Q: Why?
Blonde: Because you either meet a dinosaur or don't.

To me probability of recurrence is the same 50%.
What's the point of worrying about such probability?
The dice have already been rolled.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

User avatar
horizon
Posts: 1403
Joined: Tue Apr 12, 2011 10:10 pm

Re: Prognosis question

Postby horizon » Sat May 20, 2017 2:14 pm

My advice is to not obsess over this. I went the opposite route and did not want to know at all. I was flipping through a magazine and saw a chart listing the survival percentages for stage 3 CC patients and I almost threw up. It messed me up for weeks. Plus those percentages don't tend to show patient's age, and we are much younger than the majority of CC cases. I tortured myself for no benefit. Focus on getting through that treatment and living in the now.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Thetoad
Posts: 128
Joined: Mon Nov 23, 2015 2:46 am
Location: New Zealand

Re: Prognosis question

Postby Thetoad » Sat May 20, 2017 5:15 pm

Basil wrote:I know there's probably no real answer for this but I'm early on and prognosis is constantly on my mind. I've had multiple biopsies and a flex sig with the cutter. Treated at MD Anderson in Houston. I have been diagnosed based of Ct and MRI as either t2n1m0 or t3n1m0. Surgey is scheduled Aug 2 and I'm taking FOLFOX in lieu of adjutant radiation.

Like most I'm obsessed with survival rates. I haven't gotten a straight answer but think I'm classified 3b with the suspicious nose. Onc says literature says 75% chance of no systemic recurrence. He also said that based on my particular condition (I don't know what that entails) plus age and other factors the recurrence chance is more likely 10-15% with full FOLFOX.

I want to believe the man but my inner septic is wrestling with numbers that favor me but not to the extent of 10-15 percent.

Thoughts?


Sorry, this is about me. I'm also obsessed with survival rates, etc. I wish I wasn't. I was quoted 87% 5 year survival rate after T3N0M0 extended rt hemicolectomy. No scares from any tests, scans etc and I'm now just over 3 1/2 years. I don't understand the chart someone suggested to find the rate after this time. Maybe I'm a bit dense! I am male and was 67 at surgery. Of course, I'm looking for encouragement and yes, I've written about this previously. I'm also seeing a councellor about my anxiety, even though all has been good so far. Best wishes to everyone.
Emergency extended right hemicolectomy November 2013.
Complete blockage, small perforation well away from tumor.
Stage 2a.
T3N0M0
22 Lymph nodes clear.
No bag.
All CEA tests, CT scans and follow up colonoscopy ok.
Now on yearly appts and 6 monthly CEA tests.
Large incisional hernia repaired with mesh Nov. 2014.
Cellulitus bottom of scar.
CEA 1.6 on 30/3/17
44 months since surgery! (November 13, 2013.) All good so far.
27/6/17. Gallbladder removed, open surgery.
Pleasing consultation Feb. 2017

Thetoad
Posts: 128
Joined: Mon Nov 23, 2015 2:46 am
Location: New Zealand

Re: Prognosis question

Postby Thetoad » Sat May 20, 2017 5:17 pm

Thetoad wrote:
Basil wrote:I know there's probably no real answer for this but I'm early on and prognosis is constantly on my mind. I've had multiple biopsies and a flex sig with the cutter. Treated at MD Anderson in Houston. I have been diagnosed based of Ct and MRI as either t2n1m0 or t3n1m0. Surgey is scheduled Aug 2 and I'm taking FOLFOX in lieu of adjutant radiation.

Like most I'm obsessed with survival rates. I haven't gotten a straight answer but think I'm classified 3b with the suspicious nose. Onc says literature says 75% chance of no systemic recurrence. He also said that based on my particular condition (I don't know what that entails) plus age and other factors the recurrence chance is more likely 10-15% with full FOLFOX.

I want to believe the man but my inner septic is wrestling with numbers that favor me but not to the extent of 10-15 percent.

Thoughts?


Sorry, this is about me. I'm also obsessed with survival rates, etc. I wish I wasn't. I was quoted 87% 5 year survival rate after T3N0M0 extended rt hemicolectomy. No scares from any tests, scans etc and I'm now just over 3 1/2 years. I don't understand the chart someone suggested to find the rate after this time. Maybe I'm a bit dense! I am male and was 67 at surgery. Of course, I'm looking for encouragement and yes, I've written about this previously. I'm also seeing a councellor about my anxiety, even though all has been good so far. Best wishes to everyone.
P.S. No chemo.either.
Emergency extended right hemicolectomy November 2013.
Complete blockage, small perforation well away from tumor.
Stage 2a.
T3N0M0
22 Lymph nodes clear.
No bag.
All CEA tests, CT scans and follow up colonoscopy ok.
Now on yearly appts and 6 monthly CEA tests.
Large incisional hernia repaired with mesh Nov. 2014.
Cellulitus bottom of scar.
CEA 1.6 on 30/3/17
44 months since surgery! (November 13, 2013.) All good so far.
27/6/17. Gallbladder removed, open surgery.
Pleasing consultation Feb. 2017

TXLiz
Posts: 187
Joined: Thu Sep 22, 2016 3:31 pm

Re: Prognosis question

Postby TXLiz » Mon May 22, 2017 11:18 am

Ah, the ever cheerful colon cancer nomograms.

My diagnosis criteria doesn't fit MSKs; but I still plug it in and wonder.

My oncologists listen to me and answer my questions, but in the end say it is what it is and we are doing everything we can.

It's hollow but true. Many people say when cancer comes for you, if it wants you, it will take you. Or if it's a blip on the screen of your life, it will be a blip and on you will go.

Which will we be? I wish we had a better way to know.

It's unfair and scary. At least we can fight it, even for awhile.

When I get wound up I think about my husband's military career, and mine. We both deployed to combat, me once, him, many times. He worked a dangerous combat job that dealt with IEDs in Iraq and Afghanistan. We both knew of and saw many young men who lost their lives in an instant very painfully and saw their families grieve terribly over a death with no good bye, no closure, no peace.

I feel that if those young men and women and their families can deal, I can try to do so as well. It's unpleasant all the way around, sometimes.

Hope the best for you, and all of us. Hope I don't come off as preachy or dismissive.

Take care.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"


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