Post surgery update

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Jolene
Posts: 115
Joined: Wed Jan 23, 2019 10:17 am

Re: Post surgery update

Postby Jolene » Thu Apr 11, 2019 1:46 am

Congrats on a successful surgery and you managed to keep half of the rectum !!! Well done you !! Have you joined any support group outside of this forum ? It's amazing how meeting some real life patients sharing their experiences with you one-on-one can also benefit you ! I haven't gone down the surgery route but have been meeting some of them via a support group and they are already giving me the heads up on the challenges of LARS and how best to deal with it if it ever comes to that.

I'm surprised that chemo hasn't been recommended yet but I guessed that's because they are being cautious along the "no evidence/data produced that it improves your chances of a cure".

My oncologist mentioned that there are plenty of data on chemo benefits for colon cancer but much less on rectal cancer. According to him, most of the adjuvant chemo treatment recommendations are basically "borrowed" from colon cancer data although not the most orthodox way of proceeding but that's the way it's going at the moment.

My rectal doctor took a hands-off approach when it came to chemo recommendation as soon as I was declared as a wait-and-watch patient, citing "not part of the ww protocol".

My oncologist took several meetings explaining that I must understand that adjuvant chemo for rectal cancer as a WW patient is basically unchartered territory and on the basis of little to no data on it's benefits. But he did mentioned that for those underwent surgery, chemo is definitely recommended as there are "data to support" it's benefits.

I'm sure you will have lots more comments coming up that you should definitely do the mop-up chemo. No machines in the world can yet detect any microscopic spreads no matter what all the tests and scans are saying. You've come so far, so don't leave it to chance ! Kill every one of those lurking bastards out there with everything you've got would be my mantra, leaving no regrets knowing that you did your best !! :)

As a WW patient, it is on the assumption that my tumour is as good as gone a.k.a as if I've underwent the knife. I was recommended for 6 cycles of Xelox but to start off with just 4 cycles to see how it pans out.

All the best !

By the way, is it still colon cancer or rectal cancer for your situation ?


CF_69 wrote: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...
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Post surgery update

Postby lakeswim » Thu Apr 11, 2019 6:15 am

CF69 - same question here ... colon or rectal?

Jolene - are you in the States or in Europe?
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

CF_69
Posts: 49
Joined: Sat Dec 22, 2018 9:44 pm

Re: Post surgery update

Postby CF_69 » Thu Apr 11, 2019 7:21 am

The surgeon says rectal.

I’m leaning very heavily towards doing the 4 cycles of Xeloda.
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 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
5 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

CF_69
Posts: 49
Joined: Sat Dec 22, 2018 9:44 pm

Re: Post surgery update

Postby CF_69 » Sun May 05, 2019 11:48 pm

Quick update.

MRI on liver came back with good news. Doctors said just a cyst, no evidence of cancer.

Also I have started the Xeloda. 5000 mg a day. I did 3600 a day during radiation. I do notice a difference. I only just started, day 5 of cycle 1, but I definitely feel nauseous, tired, and my constipation I mentioned in another thread has swung all the way to the other end of the spectrum. I had probably 8-10 small bowel movements yesterday.

I had to work this evening. I found a part time job that I figured I can handle until my chemo is done and I’m further along the post surgery road.

Of course I was very worried that I would need a bathroom. I’m more or less posted in a small shack that I can’t leave for a good 6 hours. I’m sure if I had an emergency I could abandon my post, however I don’t wish to explain myself to my coworkers.

In anticipation, I took 2 generic Imodium pills at about 1 pm. I started work at 5:30 pm.

I brought a sandwich and my Xeloda so I could keep on schedule, and to my relief, made it through my shift. I had a few uncomfortable moments, but was able to hang on. When I got home, I had a pretty satisfying movement. Larger and more formed than I’ve had since surgery, which was about 7 weeks ago now.

Small victories.

I have had an excruciating pain in my hip for weeks now, which prompted an ER visit a couple of weeks ago. Something is pressing on my sciatic nerve without a doubt. I’ve been eating Robax as if it were candy for a while now. I popped 2 at 4:00pm anticipating my evening shift.

I see the surgeon in the morning. Hopefully there is a fix for this.
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 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
5 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Post surgery update

Postby lakeswim » Mon May 06, 2019 7:07 am

Good news about liver! And the job! And doing your job with no issues! I’m impressed. The Xeloda during radiation really messed me up. Lost it on a walk once.

Sorry about hip. I’ve had weird tailbone stuff and I blame it on radiation. I hope you can resolve that soon or ease your pain.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W


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