Déjà vu

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SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Déjà vu

Postby SoConfused » Mon Apr 30, 2018 10:11 pm

well ... was hoping colonoscopy last week would provide a definitive answer (better yet relief) to the case of the 13 mm nodular density noted on my latest CT scan at the suture line of my prior anastomosis.

Colorectal surgeon missed the spot initially but as he was concluding the colonoscopy, he noticed what the radiologist had noted on his report ... a submucosal mass. He biopsied - on Thursday - the results were not back today but I am already scheduled for another resection, Low Anterior Resection to be exact, on Wednesday. He said given my history (stage 4) and after consulting my oncologist, they want to take it out for further examination and this would also give him an opportunity to ' have a look inside" while he is doing my robotic surgery.

The CT scan did not note any other abnormalities and in fact stated no evidence of metastatic disease. I am numb, shocked, scared ... don't really know what to think! My original resection was in June of 2011 ... been in remission for 5 years. Why now? I am emotionally a mess ... I cannot think of what else it could be ... he must know something he is not sharing with me because on the pre-op papers today, I noticed the reason for my surgery was stated as colon cancer ... but he never officially told me the mass was cancer. Would he hide this from me to spare my feelings?

Has anyone had a similar scare? ... please keep me in your prayers. I know I have not posted here for some time, I honestly was trying to gain some normal and get over my lingering depression by distancing myself from anything that reminded me of the experience ... but I guess once you enter this world, there is no forgetting it.

I welcome any experiences, thoughts ... and encouragements. Wishing everyone well on your journeys.
Stage IV CC

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O Stoma Mia
Posts: 1261
Joined: Sat Jun 22, 2013 6:29 am

Re: Déjà vu

Postby O Stoma Mia » Tue May 01, 2018 7:20 am

SoConfused wrote:... He biopsied - on Thursday - the results were not back today but I am already scheduled for another resection, Low Anterior Resection to be exact, on Wednesday. ... I welcome any experiences, thoughts ...

I'm sorry to hear about this latest challenge for you, coming after so many years of NED.

My initial impression after reading your post is that Wednesday may be too soon to schedule such an invasive procedure.

It appears to me, from your comments, that you may not have been fully informed about the pressing need for a LAR procedure and may not have been fully informed about alternative available procedures.

In most countries there are laws requiring fully Informed Consent prior to treatment. Here is an article on Informed Consent for Treatment in Canada. In your country the laws may be similar:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5373748/

What bothers me specifically is that apparently not enough solid evidence has been given to you so far to justify a LAR procedure (in my opinion). If there is indeed such evidence, then you should have been given it along with an explanation. Furthermore, there are alternative, less invasive procedures for sub-mucosal resection, and it appears that you were not told about these or why they would not be appropriate in your case.

Here is an article on the less-invasive endoscopic submucosal dissection procedure. I think that your doctor should have at least mentioned this procedure as a possibility along with an explanation of why it would or would not be a good option in your case

https://en.m.wikipedia.org/wiki/Endoscopic_submucosal_dissection

SurvivorsSpouse
Posts: 76
Joined: Sun Nov 22, 2015 12:38 pm

Re: Déjà vu

Postby SurvivorsSpouse » Tue May 01, 2018 7:26 am

Good luck.

One thing to keep in mind is that your paperwork will get reviewed by insurance prior to approval for surgery. “Colon cancer”is most likely something he used as the ICD code to make approval sail through without much question. Otherwise, insurance may hav come back with questions and reviews that delayed surgery.

It is more likely the surgeon was talking to insurance than sparing your feelings.

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: Déjà vu

Postby O Stoma Mia » Tue May 01, 2018 2:17 pm

I was wondering if you could expand you signature a little so that we can better understand how your 6+ year journey has unfolded...

You earlier shared partial information about your original surgery (see below), but I think it might help to have a more complete picture of your past treatment history if you are now going to go into surgery/treatment again. What do you think?

When you had the original surgery, was it a robotic LAR? Did you have an ileostomy at the time?

SoConfused wrote:tumor was 2 x 1.7 x 1.1 cm in size, infiltrative and ulcerated ... and located in the sigmoid colon. It was not obstructive and appeared to be well differentied. Surgeon removed 12 inches and 15 lymph nodes. 2 lymph nodes came back positive for cancer...

SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Re: Déjà vu

Postby SoConfused » Tue May 01, 2018 6:34 pm

O Stoma Mia wrote:I was wondering if you could expand you signature a little so that we can better understand how your 6+ year journey has unfolded...

You earlier shared partial information about your original surgery (see below), but I think it might help to have a more complete picture of your past treatment history if you are now going to go into surgery/treatment again. What do you think?

When you had the original surgery, was it a robotic LAR? Did you have an ileostomy at the time?

SoConfused wrote:tumor was 2 x 1.7 x 1.1 cm in size, infiltrative and ulcerated ... and located in the sigmoid colon. It was not obstructive and appeared to be well differentied. Surgeon removed 12 inches and 15 lymph nodes. 2 lymph nodes came back positive for cancer...


Hi O Stoma Mia - it has been so long I cannot remember how to update my signature but here is my story:

months of abdominal pain and other symptoms led to a colonoscopy, my first one at 52, which discovered a 2.5 cm T3 N1 (2 of 15 lymph nodes were positive) moderately differentiated, Kras-wild tumor in my sigmoid in June 2011. My cancer was originally thought to be stage 3 and as such, the primary tumor was removed laproscopically in a sigmoidectomy - not a LAR.

MRI and CT scan discovered a suspicious, very tiny spot on my liver - a PET and biopsy proved it to be a met. FOLFOX started shortly thereafter ... within 3 months the liver spot disappeared to the point the surgeon would not operate or ablate because he could not visualize anything. I completed a full course of FOLFOX followed by two years of maintenance chemo, Avastin and Xeloda. All treatment stopped in 2013. quarterly scans and blood work ... all ok until this most recent finding.
Stage IV CC

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O Stoma Mia
Posts: 1261
Joined: Sat Jun 22, 2013 6:29 am

Re: Déjà vu

Postby O Stoma Mia » Tue May 01, 2018 11:16 pm

Thanks for providing the additional information.
Here is information on how to create/update your signature:

How to add/edit your signature:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=414489#p421597

SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Re: Déjà vu

Postby SoConfused » Wed May 09, 2018 12:15 am

I wanted to provide an update on my situation in case it may be a helpful reference to someone else in the future ... I am always looking for and finding answers in others’ stories ... quick recap: stage IV diagnosed in June 2011 with a liver met, currently in remission. My last set of quarterly scans in late April noted a 13 mm nodular density at the suture line of my prior anastomosis ehich was concerning for recurrence.

Subsequent colonoscopy identified a submucal mass - which was biopsied with “indeterminate” pathology results. A recurrenve/cancer could not be entirely ruled out and due ti my history, having had metastatic colon cancer, and the location if the mass, my surgeon and oncologist both recommended surgically removing the mass -via another resection - for a thourough pathological evaluation. I had this surgery - a robotic resection of the remaining sigmoid colon - last Wednesday. I was part of an expedited recovery program my hospital has instated recently and was out of the hospital the next afternoon. Just over 24 hours since admission for surgery. The pain was more intense than I remembered from last time but tbe recovery other than pain has been swift.

During my surgery, my surgeon was able to “look around” and confirm, visually, that there was no anomolies in my abdomen. The submucosal mass was removed - small as detected kn CT - and sent for pathology along with a number of lymph nodes. All inall, another 6 inches of my colon were removed.

Though surgeon, based on visual assessment and his years of experience, did not believe the mass was malignant - he could not confirm either way. I went to see him today for a post-op appointment and received my pathologt results ... good news. No cancer.

The nodule that showed up on both CT and during colonoscopy was an inflammatory diverticulum at the anastomosis. Official diagnosis: isolated inflammatory diverticular disease. Apparently this is more common than I realized in folks over 45 yrs old and found most often in the sigmoid colon where there is increased pressure and chance of bacterial build up due to feces. The walls of the colon at anastomosis are weaker and therefore more susceptible to such flare ups. Hope this info helps someone.
Stage IV CC

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susie0915
Posts: 757
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Déjà vu

Postby susie0915 » Wed May 09, 2018 9:00 am

Glad to hear no cancer. Hope you are recovering well from your surgery.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Geoman
Posts: 13
Joined: Sun Apr 29, 2018 8:48 pm

Re: Déjà vu

Postby Geoman » Wed May 09, 2018 9:38 am

Thank you for this update. Good to hear that it was not cancer.
Dx @ 44, rectal cancer-stage 4 with Mets to liver 8/16
CEA 19
Kras g12d; Braf
Ypt3,ypN1a,ypM1
5 rounds 5fu with avastin (4) 9/16-11/16
PVE/Liver Resection 12/16
28 days rad/xeloda 2/17-3/17
APR-4/17
Clear Margins
7 rounds 5Fu with avastin- 5/17-8/17
CEA-1.2
NED-12/17, 1/18,
Multiple spots in lungs-5/18

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Robino1
Posts: 433
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Déjà vu

Postby Robino1 » Wed May 09, 2018 10:31 am

SoConfused wrote:I wanted to provide an update on my situation in case it may be a helpful reference to someone else in the future ... I am always looking for and finding answers in others’ stories ... quick recap: stage IV diagnosed in June 2011 with a liver met, currently in remission. My last set of quarterly scans in late April noted a 13 mm nodular density at the suture line of my prior anastomosis ehich was concerning for recurrence.

Subsequent colonoscopy identified a submucal mass - which was biopsied with “indeterminate” pathology results. A recurrenve/cancer could not be entirely ruled out and due ti my history, having had metastatic colon cancer, and the location if the mass, my surgeon and oncologist both recommended surgically removing the mass -via another resection - for a thourough pathological evaluation. I had this surgery - a robotic resection of the remaining sigmoid colon - last Wednesday. I was part of an expedited recovery program my hospital has instated recently and was out of the hospital the next afternoon. Just over 24 hours since admission for surgery. The pain was more intense than I remembered from last time but tbe recovery other than pain has been swift.

During my surgery, my surgeon was able to “look around” and confirm, visually, that there was no anomolies in my abdomen. The submucosal mass was removed - small as detected kn CT - and sent for pathology along with a number of lymph nodes. All inall, another 6 inches of my colon were removed.

Though surgeon, based on visual assessment and his years of experience, did not believe the mass was malignant - he could not confirm either way. I went to see him today for a post-op appointment and received my pathologt results ... good news. No cancer.

The nodule that showed up on both CT and during colonoscopy was an inflammatory diverticulum at the anastomosis. Official diagnosis: isolated inflammatory diverticular disease. Apparently this is more common than I realized in folks over 45 yrs old and found most often in the sigmoid colon where there is increased pressure and chance of bacterial build up due to feces. The walls of the colon at anastomosis are weaker and therefore more susceptible to such flare ups. Hope this info helps someone.


Excellent that it is NOT cancer! :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5
BRAF V600e

orlar
Posts: 50
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Déjà vu

Postby orlar » Wed May 09, 2018 12:30 pm

Really happy to hear it is not a recurrence! Hope your recovery is a gentle one.
56yo male DX 5/15/17, Right Hemi colectomy 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D
2/18 PET=liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-7.2
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

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Rob in PA
Posts: 1975
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Déjà vu

Postby Rob in PA » Mon May 14, 2018 9:21 pm

So happy for you that it was not cancer!

Wishing you well on your recovery.


Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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