Post surgery update

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CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Post surgery update

Postby CF_69 » Thu Jan 10, 2019 1:32 pm

Hey all,

I will have this discussion with my surgeon, but I don’t see him for another couple of weeks.

I have a T3 N1 adenocarcenoma in the distal sigmoid colon.
Currently doing 25 Xeloda / radiation sessions. 6 more to go.

So I’ve been reading about LARS a lot and it scares the shit out of me (sorry).

I’ve had 2 colonoscopies as I was being diagnosed.

1st one said the tumor was in Sigmoid near the rectosigmoid junction 15 cm from verge.

2nd said 12 cm from verge.

MRI said “about 16 cm craniad to the anal verge adjacent to the rectum above the anterior peritoneal reflection...”

Two nodes seen in the fat of the sigmoid mesocolon, one 5mm the other 3.7 mm.

Will I get a LAR?

Obviously getting the cancer out is the priority but I would like to keep as much rectum as possible.

Has anyone had a similar tumor?
Last edited by CF_69 on Wed Apr 10, 2019 3:26 pm, edited 1 time in total.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: What surgery should I have?

Postby rtcasper » Fri Jan 11, 2019 8:58 pm

Hi, as you can see by my signature, mine was 12-13.5 cm from anal verge, difference between imaging and surgeon's sigmoidoscopy. I'm about 99% certain you're going to have a LAR. I did, had illeostomy,and had reversal surgery this past Tuesday actually. There's nothing about this journey that is pleasant, except for maybe the amazing and wonderful people you're going to meet and the support you will receive from family and friends. Good luck to you and if you have any questions, don't hesitate to ask.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Sun Jan 13, 2019 3:21 pm

Thanks for the reply.

I just hope the surgeon can leave me as much rectum as possible.

It seems as though my tumor is on the colon side of the bend, and I know they need to take tissue on either side. Just hoping for the best case scenario going forward.

Of course these are all things I will bring up when I do see my surgeon next. Just wondering if there is an operation that removes the rectosigmoid and leaves the rectum more or less intact, or if they’ll just take everything out.

I know beating this cancer is the number one thing, and I feel a bit silly worrying about “quality of life” down the road before I even get there.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: What surgery should I have?

Postby LPL » Sun Jan 13, 2019 4:33 pm

Hi CF_69,
I really dont understand why some with the tumor ’in/at’ the sigmoid junction are labelled/treated as Colon cancer (like my husband) and others are treated as Rectal cancer.
My husband’s surgeon wrote in the surgery report: ”resection of the recto-sigmoid junction and the upper rectum”.
He did not have any radiation since that is not the protocol for colon cancer. Maybe your doctor can explain this?
Last edited by LPL on Sun Jan 13, 2019 5:21 pm, edited 1 time in total.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Sun Jan 13, 2019 4:50 pm

I don’t know why either. That’s the treatment plan my doctors came up with, so I trust their judgement.

I have two suspicious nodes so maybe they wanted to carpet bomb the whole area, so to speak.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: What surgery should I have?

Postby rtcasper » Sun Jan 13, 2019 6:22 pm

I'm not 100% sure either, as I only received 5 days of radiation prior to surgery. ..that seemed to be a compromise treatment between the rectum vs.colon typical plans. My rectum was removed down to the "..." line, I forget what it's called, plus approx 18 inches of colon. As far as the possibility of leaving more rectum attached, there seems to be evidence to support that it may help in the eventual reversal, so definitely worth asking about. I think it's probably as simple as what the surgeon is comfortable doing. Either way, I've got what I've got and I'm trying to deal with it. Hopefully things work out well for you, keep us informed.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: What surgery should I have?

Postby O Stoma Mia » Wed Jan 16, 2019 2:44 am

CF_69 wrote:... I will have this discussion with my surgeon, but I don’t see him for another couple of weeks....

So, are you ready for your meeting with your surgeon?

Do you know if your surgeon is a Board Certified Colorectal Surgeon?

Do you know what surgery options are generally available for tumors/ lymph nodes in this location?

If you still have time, you might want to do some research on your own to better prepare yourself for this meeting.

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Thu Jan 17, 2019 5:15 pm

Well I’m ready in the sense that I will voice my concerns and ask a few questions that I do have.

My surgeon is a general surgeon / oncology surgeon.

I’ve met him a few times. He dropped in on my colonoscopy, he’s run a few scenarios by me but no final plan yet.

I’ve been reading these boards daily for weeks now so getting a feel for what others have gone through.

Honestly the thought of having no bowel control or ED sucks real bad. I’m also unsure about my future employment. I am / was a seafarer so I’m not sure if I’ll ever be able to go back to living at sea for months at a time, or flying long distances as I have been for the last several years.

Hopefully I can. If not that’s one more obstacle to deal with.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Mon Apr 01, 2019 9:21 pm

I had my surgery one week ago.

I only spoke to the surgeon on his morning rounds while I was still in the hospital, so I don’t have all the details yet, but from what I remember, he said that I have more than half my rectum left. I forgot to ask how much was taken on the sigmoid side though.

No ileostomy. He was able to reconnect me. He said something about reconnecting me at an angle that gives my rectum a bit more space. I was kind of out of it at the time.

I had a few small bowel movements starting I guess on the second day after surgery.

Today I was feeling constipated, and since I’ve only passed a couple of small stools, I decided that I would drink 1 cup of heated prune juice before supper this evening.

In retrospect, I should have probably tried half that amount since it worked very well, and in fact better than I wanted it too as I had a very urgent, very watery session in the bathroom soon after.

The doctor said the surgery was a success. I have a follow up appointment with him in a few weeks, and with my oncologist in about 10 days from now.

I don’t have the pathology report yet.

I’m expecting adjuvant chemo, though I guess I’ll find out for sure next week.

Took 5 months from discovery to excision. Glad it’s out. Glad the surgery went well, and glad that my surgeon is happy with the outcome.

Now I need to find this new normal I keep reading about, and hope that I don’t suffer too many LARS effects. Most of all I am grateful to have this cancer out of me, and of course hope it stays that way.

I don’t post much but I do read a lot, and would like to thank everyone that has told their stories. It’s good to read other people’s experiences and insights.

There’s so much valuable information on this board.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

User avatar
Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: What surgery should I have?

Postby Maggie Nell » Tue Apr 02, 2019 12:15 am

One cup of heated prune juice! Dude, I'm impressed you made it to the bathroom before
that express train steamed through! You'd never have got the stains out of the carpet!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: What surgery should I have?

Postby Punky44 » Tue Apr 02, 2019 12:27 am

Congratulations on a successful surgery!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Tue Apr 02, 2019 12:54 am

Maggie Nell wrote:One cup of heated prune juice! Dude, I'm impressed you made it to the bathroom before
that express train steamed through! You'd never have got the stains out of the carpet!

Trial and error, right :)
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: What surgery should I have?

Postby CF_69 » Tue Apr 02, 2019 12:54 am

Punky44 wrote:Congratulations on a successful surgery!

Thank you.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: What surgery should I have?

Postby lakeswim » Tue Apr 02, 2019 11:35 am

I'm so glad your surgery went well.

One of the surgeons I consulted (@MSK) told me you can't predict the level of LARS someone will have (unless it's a low tumor). And, even then, (IMO) people have different lifestyles (gardening at home vs hiking in the mountains vs. a seafarer like you!), so one level of LARS may feel vastly different to different people and may or may not be more life-changing. I hope you have a more positive experience and can live the life you want as much as possible.

Best wishes on a smooth recovery.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: Post surgery update

Postby CF_69 » Wed Apr 10, 2019 3:37 pm

I just came from the oncologist.

Final staging is T3N0M0 - stage 2A

He did not recommend chemo, but said I can do 4 cycles of Xeloda if I choose, and that there is no evidence that it improves your chance of a cure, though he did say that it may give you a 1 or 2% bump.

I’m not sure what to do.

He did recommend CT scans every year and a CEA test every 6 months.

Also I need a colonoscopy within a year, and then one 5 years later.

Read the surgery report too. Clean margins and a side to end anastomosis is what I got.

Overall I feel very thankful that things have gone so well. I did not have an ileostomy either.

As for LARS, I have been having frequent pressure with little output. I do feel like I can control myself. I’m only 2 weeks post surgery so I’m expecting things to change, but as of right now, I’m definitely on the constipated end of the spectrum.

I’ve been drinking clearlax, eating fiber gummies, prune juice, whatever I can think of to try, but other than one time, it’s had little effect.

What I would do to drop a nice long log right about now...
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 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
Clear CT - October 2020


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