“Near” Complete Clinical Response and what to do next

Please feel free to read, share your thoughts, your stories and connect with others!
PatMc4
Posts: 5
Joined: Sun Mar 17, 2019 3:11 pm
Facebook Username: Pat McChesney

“Near” Complete Clinical Response and what to do next

Postby PatMc4 » Fri Nov 22, 2019 3:14 pm

Hi, all! The first thing I need to do is thank all of the people who post here because this forum has been immensely helpful in my journey so far.

The short story is that I am approaching the 1 year anniversary of my rectal cancer diagnosis. As I have read on other posts, getting the medical team and treatment plan in place was not a quick process. About 6 weeks after diagnosis, I started chemo, then had XRT. About 6 weeks after finishing XRT, I went to a new surgeon who is head of the colorectal surgery department and a professor at the medical school.

Since then I have had an MRI, which indicated that they “suspected” some cancer might remain. I have had 2 flex sigs (the most recent today) and there are still some “bumps” near where the tumor was. There are no signs they are growing and my CEA is stable @ 1.2. My surgeon seems to be leaning toward a resection, although Watch & Wait is still an option. I decided to go another 3 months, have another MRI in February, along with another flex sig.

I think the fact that I am feeling so well (blood counts improving are probably the cause) may have led to taking the ostrich approach to having to face the real possibility of surgery. I know I am incredibly lucky that my treatment didn’t take more of a toll on me and I had a super support group of family and friends. I’m just a little bummed that I didn’t exactly get the results I was hoping for.

Any words of wisdom or thoughts, either about treatment or mindset? Thanks!
F
65YO at DX
DX 12/18
RC 4cm from anal verge
Adenocarcinoma 5cm
Stage IIIB
T3N2a M0
FOLFOX (6 rounds) and XRT (32 sessions)
CEA 01/19 - 28, 06/19 -1.0, 07/19 - 1.2, 11/19 - 1.2

Rock_Robster
Posts: 394
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: “Near” Complete Clinical Response and what to do next

Postby Rock_Robster » Fri Nov 22, 2019 9:43 pm

Hi, my story is very similar (except I was stage IV at diagnosis). I had a ‘complete metabolic response’ to chemoradiation (ie no cancer on PET), but after an MRI and flex sig my surgeon also suspected some cells remained. He mentioned W&W but really didn’t give me the choice. I had the surgery, and afterward tumour pathology was indeed positive (though negative margins, thankfully!), and 1 out of 26 nodes was also positive. So no regrets whatsoever from me. I have an ileostomy now (which is fine), and will go for reversal in Jan likely.

All I’d say is that W&W is not 100% reliable even in a confirmed complete pathological response, so for me in a ‘near complete response’ I wouldn’t consider it (and nor would my surgeon). However everyone is different, and having a ULAR isn’t nothing, so of course the call remains with you and your medical team.

Best of luck!
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

hawkowl
Posts: 125
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: “Near” Complete Clinical Response and what to do next

Postby hawkowl » Sat Nov 23, 2019 1:24 am

I would definitely want definitive answers. Can they rebiopsy one of the bumps? I opted against watch and wait even though I had a complete clinical response (and it turns out a complete path one also). Permanent colostomy and no regrets. I would much rather ovrrtreat than under treat
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Rock_Robster
Posts: 394
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: “Near” Complete Clinical Response and what to do next

Postby Rock_Robster » Sat Nov 23, 2019 2:11 am

hawkowl wrote:I would definitely want definitive answers. Can they rebiopsy one of the bumps? I opted against watch and wait even though I had a complete clinical response (and it turns out a complete path one also). Permanent colostomy and no regrets. I would much rather ovrrtreat than under treat

I tend to agree; I think there is a strong argument to try W&W for a cCR given that even in the case of a local recurrence the resection rate is still, I believe, >90%; and median overall survival doesn’t seem to differ vs up-front surgery. However I think the big question here is “is this really a complete clinical response?”. I wonder if there may be other helpful data points - for example a ctDNA test (in addition to rebiopsy as you suggest hawkowl).

The other consideration may be - how large would the surgery be if it went ahead? ULAR or APR? Open or lapro? Sphincter-sparing? Ostomy? Temporary or permanent? This might potentially help tip the risk/benefit scales one way or another.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

PatMc4
Posts: 5
Joined: Sun Mar 17, 2019 3:11 pm
Facebook Username: Pat McChesney

Re: “Near” Complete Clinical Response and what to do next

Postby PatMc4 » Sat Nov 23, 2019 11:54 am

Thank you both for your thoughts. After a little time to roll this around in my head, I tend to think that a suggestion that there may be cancer remaining is reason to have the resection. I did ask about a biopsy and was told they don’t usually do them since they would be testing such a small amount of tissue, but it could be done for my peace of mind. During my first visit with the surgeon, he said surgery would be robotic because I wouldn’t want his big hands in me. He has said there would be a temp ileostomy. Now I just need to make sure my head stays in “I got this” mode.
F
65YO at DX
DX 12/18
RC 4cm from anal verge
Adenocarcinoma 5cm
Stage IIIB
T3N2a M0
FOLFOX (6 rounds) and XRT (32 sessions)
CEA 01/19 - 28, 06/19 -1.0, 07/19 - 1.2, 11/19 - 1.2

User avatar
susie0915
Posts: 941
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: “Near” Complete Clinical Response and what to do next

Postby susie0915 » Sat Nov 23, 2019 2:22 pm

I went through 5 weeks of chemo/radiation. After finishing my surgeon did a sigmoidoscopy and said all that was left was scar tissue. I had a pet scan that showed no evidence of disease. I was never offered watch and wait, but my surgeon said I may not need chemo after depending on pathology. When the pathology report came after my resection, margins were clear, but there was minimal residual cancer cells. I am sure if I would've been offered watch and wait I probably would've have done it, but my cancer would've returned. I did end up doing 6 rounds of Xelox after surgery. It is such a tough decision.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

PatMc4
Posts: 5
Joined: Sun Mar 17, 2019 3:11 pm
Facebook Username: Pat McChesney

Re: “Near” Complete Clinical Response and what to do next

Postby PatMc4 » Sat Nov 23, 2019 8:35 pm

susie0915 wrote:I went through 5 weeks of chemo/radiation. After finishing my surgeon did a sigmoidoscopy and said all that was left was scar tissue. I had a pet scan that showed no evidence of disease. I was never offered watch and wait, but my surgeon said I may not need chemo after depending on pathology. When the pathology report came after my resection, margins were clear, but there was minimal residual cancer cells. I am sure if I would've been offered watch and wait I probably would've have done it, but my cancer would've returned. I did end up doing 6 rounds of Xelox after surgery. It is such a tough decision.


Thank you for sharing your experience. It seems like there are a lot of tough decisions on this journey.
F
65YO at DX
DX 12/18
RC 4cm from anal verge
Adenocarcinoma 5cm
Stage IIIB
T3N2a M0
FOLFOX (6 rounds) and XRT (32 sessions)
CEA 01/19 - 28, 06/19 -1.0, 07/19 - 1.2, 11/19 - 1.2

CF_69
Posts: 89
Joined: Sat Dec 22, 2018 9:44 pm

Re: “Near” Complete Clinical Response and what to do next

Postby CF_69 » Sun Nov 24, 2019 11:00 am

I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

PatMc4
Posts: 5
Joined: Sun Mar 17, 2019 3:11 pm
Facebook Username: Pat McChesney

Re: “Near” Complete Clinical Response and what to do next

Postby PatMc4 » Sun Nov 24, 2019 2:23 pm

CF_69 wrote:I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.


Thank you.
F
65YO at DX
DX 12/18
RC 4cm from anal verge
Adenocarcinoma 5cm
Stage IIIB
T3N2a M0
FOLFOX (6 rounds) and XRT (32 sessions)
CEA 01/19 - 28, 06/19 -1.0, 07/19 - 1.2, 11/19 - 1.2

User avatar
henry123
Posts: 205
Joined: Sun Oct 08, 2017 3:25 am

Re: “Near” Complete Clinical Response and what to do next

Postby henry123 » Sat Nov 30, 2019 4:16 am

CF_69 wrote:I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.



I concur that they don't have exact picture till they actually open you up.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

_Jelen90
Posts: 22
Joined: Sat Jan 19, 2019 7:12 pm

Re: “Near” Complete Clinical Response and what to do next

Postby _Jelen90 » Sun Dec 01, 2019 8:54 pm

I wouldn't mess with it and go for surgery especially if you had lymph node involvement...In my opinion it's way to risky to do watch and wait when you are Stage 3.

They thought my husband had a complete response to chemorad as the tumor was completely gone...turns out one lymph node tested positive after surgery.
21/12/2018 DH 28 diag. Rectal cancer
T2N1M0 - Stage IIIA
6 weeks of Chemorad Jan-March 2019
APR surgery June 2019
Permanent colostomy
Path report : tumor completely gone but 1 lymph node out of 8 tested positive
6 rounds of Mop up XELOX August 2019


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



Who is online

Users browsing this forum: No registered users and 34 guests