What the hell happened to my colon? I need answers

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King2477
Posts: 5
Joined: Tue May 22, 2018 3:41 pm

What the hell happened to my colon? I need answers

Postby King2477 » Tue May 22, 2018 4:59 pm

43yr old male, with no symptoms or family history of colonrectal cancer.
In October 2017 I took a screeing test that came back + for blood in my stool. Within 2 weeks I had a colonospecy with a GI. Was told I had a mass and needed surgery. Got a second opinion from another GI who confirmed the mass but said he could probably remove it in a couple "snare" colonospecy procedures. An attempt was made in November removing about 90%. I was told the next day it was a tubulovillouss adenoma polyp with high grade dysplasia. The GI said he couldn't safely remove the rest and was concerned about 'bleeding". Said I needed surgery. All CEA and an MRI of my abdomen was negative. The was no real concern about time by the GI but said I needed it done. In December I found a colonrectal surgeon I liked and proceeded to schedule . He gave me a flexible sigmoidoscopy at the time without a biopsy . Because it was a robotic assisted surgery it took about 7 written complaints before I got a date in Feb then rescheduled to April . After successful resection surgery I was told 3 weeks later which was Friday that the pathology revealed cancer. 12 lymph nodes were taken with 1 coming back abnormal. The said it was stage 3 based on that. My questions are 1) Did the GI who removed 90.% possibly put me at risk and exposed my tubulovillouss polyp to other areas of the colon? 2) Sould my surgeon had taken a biopsy before surgery? 3) Could time and the scheduling been a contributer. I am scheduled for a 3 months of chemo pills and port injections. Thanks in advance. I'm having a hard time with this. King2477

Utwo
Posts: 285
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Location: T.O.

Re: What the hell happened to my colon? I need answers

Postby Utwo » Tue May 22, 2018 8:22 pm

Welcome to uncertain world of cancer diagnosis and prognosis!
The answers on all your questions are either "yes, but" or "probably".

1) Did the GI who removed 90.% possibly put me at risk and exposed my tubulovillouss polyp to other areas of the colon?
Yes, although nobody can tell a likelihood of such event.
It's a decision that was based on limited information.
In the best possible outcome you could have avoided surgery altogether.

2) Sould my surgeon had taken a biopsy before surgery?
Yes, although results of such limited biopsy are not 100% reliable.

3) Could time and the scheduling been a contributer.
Yes, although colon cancer is slow growing and a likelihood of such event is rather small.

P.S. I was in a similar situation and needed a laparoscopic surgery after removal of a "polyp" during colonoscopy.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

King2477
Posts: 5
Joined: Tue May 22, 2018 3:41 pm

Re: What the hell happened to my colon? I need answers

Postby King2477 » Wed May 23, 2018 7:52 am

Thanks for the response. Clearly this is not the outcome I wanted nor anticipated. I reached out to the GI who attempted the removal and he hasn't returned any messages despite my cancer diagnosis. I became slightly suspicious of his original attempt and wondered did he worsen things. Didn't know if it was possible. Also 1 correction. He knew I had a tubulovillous polyp before the attempt to. Thanks for It's truly appreciated.

Achilles Torn
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Joined: Fri Dec 16, 2016 2:41 pm

Re: What the hell happened to my colon? I need answers

Postby Achilles Torn » Wed May 23, 2018 5:15 pm

I had a somewhat similar experience and did a lot of research after. In brief- I had rectal bleeding in 2010 and during my colonoscopy the Dr. found a large ugly polyp which he removed via snare. The pathology came back pre-cancerous (high grade dysplasia) so I didn't have a resection but had follow-up colonoscopies. I was clear at 1 year, clear at 2 years and then told to come back in 5. I came back early (4.5 years) and they found a small tumor in the same location where the polyp had been. Biopsy of the tumor via scope came back with no cancer cells and high grade dysplasia again. This time my surgeon was sure it was cancer however and did a resection. Turns out It had spread inside the colon wall, into numerous local and distant lymph nodes and was indeed aggressive Cancer, Stage 4 incurable. Seems it had spread where it wasn't visible as either some cells were left behind when the original polyp was removed, and/or the original polyp was indeed cancer all along. My surgeon was suspicious a mistake had been made on the biopsies and ordered the pathology to be redone on both - but they were confirmed to only have pre-cancerous tissue.

Turns out from some online papers that there is about a 30% false negative rate from biopsy taken during colonoscopy and visual scope for detection has a similar false negative rate.

Not sure if that helps

AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: What the hell happened to my colon? I need answers

Postby DarknessEmbraced » Thu May 24, 2018 7:01 am

I'm sorry you're going through this and hope your chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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O Stoma Mia
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Re: What the hell happened to my colon? I need answers

Postby O Stoma Mia » Thu May 24, 2018 4:03 pm

To answer your questions more thoroughly, there are two additional pieces of information that would be needed:

1. How large was the polyp that was 90% removed?
2. What type of polyp was it? Pedunculated? Sessile?

This information should have been provided in the colonoscopy report.

There are established SOPs and standards for polyp removal, and they all take into account the size of the polyp and the type of polyp before deciding what action to take..

King2477
Posts: 5
Joined: Tue May 22, 2018 3:41 pm

Re: What the hell happened to my colon? I need answers

Postby King2477 » Fri May 25, 2018 7:35 am

Thanks for your response. The doctor's notes read "Findings-Very large predunculated sigmoid polyp approximately 3.3 cm seen about 25 cm from anal verge. Polyp was friable with a broad base. About 90% of polyp was removed by piecemeal snare cautery"
Also. I obtained some doctors notes from another surgeon I saw after the attempt to renove. Her notes read. "his pathology report does not make sense to have a polyp with dysplasia and then microinvasion in the stalk, does he have cancer"
Any help would be greatly appreciated.


O Stoma Mia wrote:To answer your questions more thoroughly, there are two additional pieces of information that would be needed:

1. How large was the polyp that was 90% removed?
2. What type of polyp was it? Pedunculated? Sessile?

This information should have been provided in the colonoscopy report.

There are established SOPs and standards for polyp removal, and they all take into account the size of the polyp and the type of polyp before deciding what action to take..

King2477
Posts: 5
Joined: Tue May 22, 2018 3:41 pm

Re: What the hell happened to my colon? I need answers

Postby King2477 » Fri May 25, 2018 7:46 am

Achilles Torn wrote:I had a somewhat similar experience and did a lot of research after. In brief- I had rectal bleeding in 2010 and during my colonoscopy the Dr. found a large ugly polyp which he removed via snare. The pathology came back pre-cancerous (high grade dysplasia) so I didn't have a resection but had follow-up colonoscopies. I was clear at 1 year, clear at 2 years and then told to come back in 5. I came back early (4.5 years) and they found a small tumor in the same location where the polyp had been. Biopsy of the tumor via scope came back with no cancer cells and high grade dysplasia again. This time my surgeon was sure it was cancer however and did a resection. Turns out It had spread inside the colon wall, into numerous local and distant lymph nodes and was indeed aggressive Cancer, Stage 4 incurable. Seems it had spread where it wasn't visible as either some cells were left behind when the original polyp was removed, and/or the original polyp was indeed cancer all along. My surgeon was suspicious a mistake had been made on the biopsies and ordered the pathology to be redone on both - but they were confirmed to only have pre-cancerous tissue.

Turns out from some online papers that there is about a 30% false negative rate from biopsy taken during colonoscopy and visual scope for detection has a similar false negative rate.

Not sure if that helps

AT


Thanks for the help. This is very important and helpful. The possibility of cancer cells spreading or anything worsening because of an attempted removal in place of surgery is most concerning. My 1st GI told me I needed surgery while my second opinion GI told me he was more aggressive with removal and would attempt it. I reached out to the the second GI who removed 90% of it. He has not returned any of my calls or messages.

King2477
Posts: 5
Joined: Tue May 22, 2018 3:41 pm

Re: What the hell happened to my colon? I need answers

Postby King2477 » Fri May 25, 2018 7:48 am

DarknessEmbraced wrote:I'm sorry you're going through this and hope your chemo goes well!*hugs*

Thanks for the kind words!

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O Stoma Mia
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Re: What the hell happened to my colon? I need answers

Postby O Stoma Mia » Sat May 26, 2018 12:47 am

King2477 wrote:..
Any help would be greatly appreciated...

MD Anderson Colorectal Cancer Screening Agorithm
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59399&p=471062#p471062
,
NCCN algorithm for handling pedunculated polyps Section: COL-1, page 12
https://www.tri-kobe.org/nccn/guideline/colorectal/english/colon.pdf


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