Page 2 of 2

Re: Post surgery update

Posted: Thu Apr 11, 2019 1:46 am
by Jolene
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...

Re: Post surgery update

Posted: Thu Apr 11, 2019 6:15 am
by lakeswim
CF69 - same question here ... colon or rectal?

Jolene - are you in the States or in Europe?

Re: Post surgery update

Posted: Thu Apr 11, 2019 7:21 am
by CF_69
The surgeon says rectal.

I’m leaning very heavily towards doing the 4 cycles of Xeloda.

Re: Post surgery update

Posted: Sun May 05, 2019 11:48 pm
by CF_69
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.

Re: Post surgery update

Posted: Mon May 06, 2019 7:07 am
by lakeswim
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.

Re: Post surgery update

Posted: Sat Aug 17, 2019 11:45 pm
by CF_69
Turned out to be a herniated disc. I’m doing physio for it.

I just had a follow up with my surgeon. He explained in greater detail what he did during the surgery.

He told me he removed my entire sigmoid and explained about the blood supply. It all seemed to make sense to me, though from what I’ve read some do leave a partial sigmoid.

He also explained my anastomosis in greater detail. It’s side to end with a bit of overlap which I guess gives a little extra room for storage along with my half rectum. He drew me a little diagram.

Overall I think I’m doing pretty well. I’m not like before, but I am able to function out of the house. I think I could even go back to life at sea.

My surgeon says it takes about 18 months to get to the “new normal” so if I improve even more in the next year, I think I’ll have a pretty manageable life.

Now I’m just concerned about recurrence, like I assume we all are.

Re: Post surgery update

Posted: Sat Jan 04, 2020 1:44 am
by CF_69
Well I had 6 month post surgery scans come back clear at the end of September. My oncologist released me to my family doctor for monitoring, so I take that as very positive.

I have a colonoscopy coming up in about 2 months then another CT scan in September.

I finally started to work out again. Mostly concentrating on physio exercises for my bad back, and then building up my endurance.

I also found out that I can’t go back to my old job. I guess I’m too much of an insurance risk now, and can no longer pass the medical required. So I’m a middle aged man with a bad back looking for a job. It has not been successful. I don’t know what I’m going to do.

I feel irritated all the time. Some days I feel like I can’t get out of bed. As for LARS, I don’t think I have it too bad, but I still have some difficult days. Seems like I’ll be fairly normal for a while, then have a couple of days where I am constantly taking dumps. Not emurgency but I’m talking frequent, and fair sized. Like a backlog, if you will.

Maybe the exercise is getting things going. I still have half a rectum so it makes sense that I would go half as much twice as often.

So I feel grateful of course that my cancer treatment has gone as well as it could, but now I’m kind of in a “what the hell do I do now” phase. My wife and son and I are staying with family, and I don’t see that changing anytime soon. I’ve been getting nothing but rejections on the job search front. I feel like I got screwed by my former employer. I suppose it’s a predicament many people find themselves in these days.

There just isn’t much I can physically do yet. I can’t really lift anything and even with my “mild” LARS I don’t feel like I can be too far from a toilet and shower for too long.

I need to figure something out.