Is LARS a foregone conclusion? Anyone doing W&W?

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lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Sat Nov 24, 2018 2:28 pm

Hello, all. It's been a while. I am done with 4 months of FOLFOX and 28 sessions of Chemo/Rad. I finished radiation last week and while I feel like I should celebrate, after enduring all of that for the last 6 months, thoughts of the future sober me quickly. I get a break now and then get scans in mid-January - to determine how much the tumor has shrunk. My initial chemo apparently reduced it a bit; time will tell what radiation does. Doctors tell me surgery happens fast after scans - so I feel like I need to be ready and researched.

Watch & Wait (or, as my team calls it - "Surveillance") could be an option for me if the tumor has completely shrunk. But, most likely, I will have surgery. I am assuming the latter. It seems like a lifetime ago since I spoke to my surgeon so I don't recall the exact wording for the surgery she plans to but I do believe they will be taking my entire rectum and uterus and creating a new rectum for me.

I have been reading a lot about RC folks and their struggles with LARS and I am wondering ... >>is there is ANYONE who does NOT have LARS after surgery?<<

Having just been through chemo radiation and still dealing with the stomach and bowel issues associated, I have a new understanding of how LARS affects one's life. ("Increased frequency and urgency" is no joke and really limits you.)

As it's been stated - the surgeons don't seem to discuss this ahead of time - even though it's well documented in the literature (though I can't follow all of it). Neither of the surgeons I consulted with mentioned anything about it. As one surgeon put it, when I asked what life would be life after surgery - he said, "You just may not want to eat before you go to a cocktail party." Based on what I've read - it's far more complicated of an issue for most. Is there anyone out there who had surgery who does NOT have LARS? Or is it pretty much a foregone conclusion? It sounds like a life changer.

Also, I am about to embark on WATCH & WAIT research. Now that I've been indoctrinated into the medical world, I know how things work and I probably won't have much time to make a decision or the opportunity for back and forth conversations with my surgeon to get answers I need - if I indeed have a decision to make, that is. I will research the boards on my own, but if anyone has seen any new research on W&W or any good current info, I'd appreciate it. Or, if you are watching and waiting or know anyone who has, I'd love your perspective. When I read a little about this when I started this "journey" in the Spring, I assumed I'd never consider Watch & Wait, but the doctors seem to talk it up as a real option and given LARS seems to be such a life-changer, perhaps I should research and consider W&W more seriously.

Thanks to all who helped me out with chemo advice. I truly value this board as a resource and community. But I also feel far more stupid than most on here. I am an educated person with a BA and Masters, but I am amazed at the level of understanding most on here have for this topic. Personally, I find the learning curve to be extremely steep. And when you already have anxiety about the topic and your spouse/caregiver prefers to take the doctors at their word (and is not willing to help research or bounce ideas off of), I sometimes have to just lessen one anxiety and not read about anything for a while - even if it could prove helpful. Am I the only one? You all seem like pit bulls for information and PhDs in science. (My parents are PhDs in scientific research and would read scientific studies for fun, but sadly, they both were diagnosed with dementia as I was diagnosed and don't even realize I am sick, let alone able to help me decipher these studies.)

Happy Thanksgiving to all too! It was a joy to have a real (mini) meal after eating only applesauce, rice, and bananas for the previous month!
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

ozziej
Posts: 224
Joined: Thu May 21, 2015 8:35 pm

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby ozziej » Sat Nov 24, 2018 3:55 pm

Does everyone who has a low anterior resection develop LARS? Good question. The research suggests between 30 and 90% do, though the quality of the research is poor. The risk factors are (in order of importance) height of the anastomosis (lower = higher chance of LARS), radiation, presence of diverting stoma (particularly for more than 6 months), straight coloanal connect. There is a tool called POLARS which can be used to predict likelihood of LARS. It's important to note that LARS is not one thing, there are degrees, and many show significant improvement by 2 years out. I am 3.5 years out from stoma reversal after ULAR. I have major LARS but it's manageable. My story is slightly different in that i had a supposedly benign tumour removed by EMR, only to discover it was malignant (stage 1). Too late for radiation. I wasn't offered chemo but was offered watch & wait or ULAR. In hindsight if i had been able to have chemo i would have taken the watch and wait path. There are several W &W folk on this board who will hopefully talk about their experience. I have done extensive research on both LARS and W&W and have found that the amount of W&W research exponentially outweighs that on LARS. My guess is that W&W will eventually replace LAR/ULAR and we LARSians will be seen as collateral damage. It's great that you are doing this research now. It's a hard call to make. Best wishes for the future.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

heiders33
Posts: 314
Joined: Sat Nov 04, 2017 11:08 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby heiders33 » Sat Nov 24, 2018 9:36 pm

I had a LAR, ileostomy, and reversal and do not have LARS at all. I also had radiation. My tumor was somewhere mid-rectum. None of my doctors talked to me about LARS beforehand and I knew nothing going in. After my surgery I read a lot about it. I did pelvic floor exercises before my reversal and have not really had any issues, just some loose bowels and a couple episodes of diarrhea a few weeks after reversal. But maybe I’m just one of the lucky ones.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby prs » Sat Nov 24, 2018 11:33 pm

Hi lakeswim, this thread will take you thru the W&W learning curve fairly quickly. I really hope you have a complete clinical response to the radiation, and as you'll learn in the thread, your tumor can keep on shrinking for weeks after the treatment ends, so no need to rush any decision. Take your time to get it right, and feel comfortable about any course of action you choose to take.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53498
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Mon Nov 26, 2018 7:24 pm

Hello, all, and thank you for your responses regarding LARS. (I have responded re: W&W in the thread Peter sent me to. Thanks, Peter.) It seems that you're a very lucky person if you don't have LARS as it seems to affect most. If I have the option of W&W, it would be extremely helpful to know more about LARS, so I have that info to make my decision.

I need to revisit with my surgeon ( haven't seen her in 6 months as I am doing TNT) what type of surgery she has planned for me and how she is doing the surgery - so I can ask here more specific questions about LARS based on what will be done to me. My tumor is not low, so maybe that will help me, but I have had both chemo and radiation up front - should that put me in an at-risk group.

I am also a bit confused as I saw 2 different surgeons in two separate places very early on (when I knew very little about anything). They both seemed to want to take the entire rectum (plus potentially the uterus as the tumor appears to be heading that way) and replace with a neorectum. (I don't know what you'd call that surgery - and the terminology for different surgeries is confusing to me), but I think one was doing it robotically and one (I didn't go with) wasn't. Again, I need to revisit this - should the type of surgery matter in the risk of LARS.

Hopefully, some others will chime in here about LARS and how it has affected them.

Thanks.
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Mon Nov 26, 2018 7:33 pm

Claudia (Scandanavian) didn't have LARS after her reversal. She doesn't post that much here though.

I'm dealing with it now and it is difficult and sometimes maddening. If you look at it from a physics perspective, you have a tube that sends out waste towards a closure made by squeezing sphincter muscles together. It would be like pinching your fingers together on a water hose and then sending more and more water through the hose. Eventually the pressure will be stronger than the closure. Having the tumor higher up means that you get more storage space though. When it first shows up at the sphincter, you may get signaling and then you have some time to get to the bathroom. Those with more room get more time for things to accumulate. That's my current working theory but I'd like to kick it around with someone better at anatomy and function.

The mastery appears to be to come up with a way to control the flow - or, maybe for some, the body manages to do it without a lot of effort. My current working list:

- Imodium to slow things down so that you have time to do things
- Slippery Elm to speed things up
- Fasting so that there's nothing to come out
- Enemas to remove waste far more quickly
- Dairy, coffee to speed things up.
- Spritzer to speed things up.
- Miralax to speed things up
- Fiber to bulk up stool so that it doesn't come out in dribbles over a long period of time

The alternative, of course, is a Colostomy Bag. I'm four months from reversal and things are challenging. They are better than the first week which was really awful. The improvement is more about managing the issues than it is about me having the sphincter strength to hold it in. At a certain level of flow, I can't. At least without my toolkit above. And it will take me quite some time to really learn how to use those tools as I'm living at the speed of life right now.

It is quite difficult and I had very little preparation for what would happen. I had heard what could happen but I expected things to turn out better.

So I don't have concrete answers. I have heard of a very few with no problems. But I have heard from far more with problems.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Phillypatient
Posts: 22
Joined: Sun Aug 05, 2018 11:28 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Phillypatient » Mon Nov 26, 2018 10:03 pm

Neither of the surgeons I consulted with mentioned anything about it. As one surgeon put it, when I asked what life would be life after surgery - he said, "You just may not want to eat before you go to a cocktail party."


This is borderline insulting and quite infuriating. I also had a similar experience, except I don't go to any cocktail parties anymore or generally leave the house. I'm 11 months out from a ULAR. LARS is disruptive to sleep, eating, exercise and is mentally, emotionally, and physically exhausting. Enemas seem to be an option, but some doctors are not on board. LARS is real and can impact your QOL in unthinkable ways. The words of an oncologist MD, PHD, who took the time to speak to me before I started treatment, still haunt me. He said, "you do not want to lose this organ. You must try to keep it at all costs. Fight with you docs if you have to, but don't just assume surgery is the answer." I should have paid more attention to him.

In hindsite, I would have watched and waited, and done a permanent colostomy to have some quality of life. A ULAR is really just a sanctioned form of torture.

That's another data point
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Mon Nov 26, 2018 11:11 pm

I came across pretty negatively to paint a picture of the difficulty. But I do go to work every day, drive to do errands, workout when I have the time and deal with a fair amount of home maintenance. There are many others that lead somewhat normal lives, at least in appearance to outsiders.

I've mentioned to my manager that I really should go out for a month or two of short-term disability but I was generally ignored and the reason I was ignored was because of appearance, apparent ability to do the work and working out in the gym. I can do a lot of things but many of them not in precise time.

I maintain a small emergency kit that I carry around in a larger emergency bag and it allows me to clean up minor to major messes and it's kept me sane. I just need to maintain sufficient supply levels.

I did not have the option of doing W&W given that I started with a tumor of over 100 cubic centimeters and it was under ten after chemo and radiation but it was not going to go away by itself. It would have been nice to know what to expect after reversal - from the surgeon, but I don't think that they think about it and that people get used to it or improve. I do have the option of a permanent colostomy but I don't mind trying to go it without the bag. I also have the option of working from home but I like the challenge of trying to not be stuck at home by LARS.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Big Jay
Posts: 32
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Big Jay » Wed Nov 28, 2018 10:31 am

I read far too many LARS horror stories and that lead me to go with W&W when I had a CCR. This was against Johns Hopkins' advice... but they don't really do W&W since it hasn't been clinically proven... JHH plays it safe. I did visit MSK and talked to Dr. Garcia-Aguilar (he's heading a nationwide W&W study) and he told me that I would be a good candidate so I decided to wait it out.

Unfortunately, after quarterly scans and flex-sigs, some "nodularity" reappeared at the old tumor scar exactly one year after my original CCR. Nothing showed on the scans but it wasn't worth the risk. So, I went in for the surgery. Luckily the pathology report only found a small 3mm tumor and no involved nodes. So, chemo was not recommended.

On a side note: While JHH doesn't recommend W&W, if their patients want to do it, they will provide the support. The surgeon I dealt with told me he's had a couple dozen patients on W&W. In his experience, so far, about half of them have had the cancer come back. This is quite a bit higher than the <20% that Habr-Gama is claiming. I know this surgeon's experience isn't a controlled clinical study but if I'd know about the 50% chance I'm not sure I would have gone for W&W in the first place.

As for the much feared LARS: I'm about 7 months out from reversal and things aren't that bad. Since the first hectic month after reversal things have gotten steadily better. I've only seriously crapped myself once (while climbing a steep hill trail and having ignored an earlier bathroom opportunity). I do get the occasional "peeping turtle" but as long as I don't eat massive meals, and head to the bathroom as soon as I feel the need, things are controllable. I follow my mother's advice from when I was a kid: if I'm about to go somewhere and I don't know when I'll see the next bathroom, even if I don't have to go now, I just do it anyway just to be safe.

In the end you need to know what level of risk you're comfortable with. Talk to your doctors and get a second opinion.. maybe even a third.. if that's what it takes. However, I wouldn't make the decision based on the fear of LARS. I think we all get it in one form or the other. For some it isn't too bad. Unfortunately some others have it worse. Luckily it sound like there are work arounds for the worst cases.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby prs » Wed Nov 28, 2018 2:00 pm

Hi Big Jay, did you have six months of mop up chemotherapy after you went on W&W, either FOLFOX or XELOX?
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Wed Nov 28, 2018 2:40 pm

Thanks for the account Big Jay.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
Atoq
Posts: 325
Joined: Wed Oct 25, 2017 9:31 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Atoq » Wed Nov 28, 2018 3:04 pm

I am Claudia, mentionwd by NHMike, I am Italian and live in Norway. I had reversal in June 2018 and don’t have problems except perhaps more frequency, but very manageable. My tumor was quite low (5 cm from anal verge) and it looked like it went through the colon, so surgery was necessary.
I did not do mop up chemo, so I am doing W&W in a way. :D

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

Big Jay
Posts: 32
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Big Jay » Wed Nov 28, 2018 3:25 pm

Hi Big Jay, did you have six months of mop up chemotherapy after you went on W&W, either FOLFOX or XELOX


No chemo besides the Xeloda with the radiation. JHH didn't recommend it and neither did MSK. I asked my surgeon if his patients with a reoccurrence had the additional chemo. He said some had and some hadn't.

Another note on LARS fears: I lived with my radiation blasted rectum for a year and it gave me a lot of problems. Lots of urgency and occasional leakage issues. I think it just wasn't very stretchy with all of the scarring. Seven months after reversal I'm not really any worse than I was before surgery. In fact, I think my ability to hold things back are slightly better. I think the piece of large intestine that's been stapled to the back end of my sphincter has more storage capacity then my old nuked rectum.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Wed Nov 28, 2018 3:43 pm

Curious about lack of chemo. I thought W&W involved everything upfront. But I’m still learning so perhaps your tumor hadn’t spread beyond your rectum (like mine has - hence the chemo and chemo/Rad up front).

I’m also curious if the radiation effects get WORSE over time as it continues to work on the tumor? Because I’m a week out from the end of radiation and my stool is better than it was BEFORE I was diagnosed. (Still a little concern about urgency but I think it’s more paranoia.)

My tumor is apparently large too (though it diminished a bit with chemo).

Yet it’s interesting that the RadOnc said the radiation only continues to work on the tumor and normal tissues should start healing right away. I wonder if location plays a big part in this or it’s just the individual.
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

Gravelyguy
Posts: 82
Joined: Thu Jul 05, 2018 6:03 pm

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Gravelyguy » Wed Nov 28, 2018 3:43 pm

Big Jay, I am still laughing at "Peeping Turtle", what a great description!

I had ULAR less than a cm from the anal verge. I was/am stage 4 so no real w and w option available. I had reversal surgery in mid June. The first several weeks were pretty interesting and since then every month has seen progress. I still have a peeping turtle every once in a while, 1 to 2 times a week, mainly because I try to wait too long after the warning signs start or don't have access to a bathroom. I still have LARS but it is manageable. I have never had to take Imodium or any other over the counter products. I usually go in the morning and in the evening. The main LARS symptom I have is going over several trips, turtle caravaning? It makes going to the bathroom a 15-20 min deal. I do take a good probiotic. I am not sure if that has helped or not. That, I think, is the frustrating part. Why do some of us get off "easy" and others have such a tough time?

It is amazing how intune we become with our bodies and having to go to the bathroom. What was once something we never really had to think about, now can consume much of our thoughts.


So to answer your question, I thinks LARS affects quite a few of us but the maddening part is there is no consistency with the severity of it. It is definitely something that needs to be studied further. I personally would struggle with watch and wait. I wanted it out of me as soon as possible.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection cancer is out of here!
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12 clear scans, CEA .9 still NED!


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