Low rectal tumor without LARS?

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kal74
Posts: 5
Joined: Fri Jul 28, 2017 7:26 pm
Facebook Username: kal74

Low rectal tumor without LARS?

Postby kal74 » Wed Oct 25, 2017 6:36 pm

I've just finished chemo and radiation to shrink my tumor which was 3cm from av. Everything I'm reading seems if you have a low tumor, radiation and LAR surgery you should resign yourself to the fact that you'll be spending most days in the bathroom after reversal. I would expect this for the first few months but it seems to be years of issues that are never ending. I can't even imagine how any of these people work and if I should prepare myself mentally for what's to come. I know everyone is different but I'm not reading any semi positive outcomes which is scary and depressing for someone who is young and has kids plus RC.

Basil
Posts: 207
Joined: Thu Mar 16, 2017 12:33 pm

Re: Low rectal tumor without LARS?

Postby Basil » Wed Oct 25, 2017 8:39 pm

Not exactly on point but I was 7 cm from the verge. 90% of my rectum was removed. I had reversal surgery on 9/25 and was back to work in two weeks. Only issue is very minor constipation. I'm fine ar work and all the other things I have to do outside the home.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: Low rectal tumor without LARS?

Postby NHMike » Wed Oct 25, 2017 8:57 pm

I just looked and mine is 5.1 cm. I didn't pay attention to this number before but I decided to check it since it matters soon. So I'm right in the middle between you two.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Low rectal tumor without LARS?

Postby Lee » Wed Oct 25, 2017 9:09 pm

kal74 wrote: . . . resign yourself to the fact that you'll be spending most days in the bathroom after reversal. I would expect this for the first few months but it seems to be years of issues that are never ending. I can't even imagine how any of these people work and if I should prepare myself mentally for what's to come.


As a result of radiation 13+ years ago 2/3rd of my rectal muscles were destroyed. As a result, I was tied to the toilet for 3+ hrs anytime I ate. Prior to my surgery and thanks to a wonderful Ostomy nurse, I learned what a colostomy was and have one today. (with out this bag, I could have been looking at 30+ BM daily) Believe me, this bag gave me my life back. I can be out all day and not worry where the nearest bathroom is. I can eat what I want and not worry how certain food can effect my bowels. I play in the ocean, horseback riding or what ever. At the end of the day this colostomy DOES NOT hold me back.

Other people have found great success with daily enemas. 30 mins a day and they are good to go for the rest of the day. In the search bar, look up "daily enemas". Other who have a permanent colostomy have great success doing daily irrigations and usually they don't need to wear a bag for the rest of the day.

Know that you do have options.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
susie0915
Posts: 438
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Low rectal tumor without LARS?

Postby susie0915 » Thu Oct 26, 2017 7:06 am

My tumor was 5 cm above anal verge. I did experience frequent bowel movements for about a year after reversal. Never had problems with not being able to hold it, just went a little bit often. I went to the bowel control clinic at University of Michigan. The doctor recommended pelvic floor physical therapy and meeting with a dietician. The dietician recommended the low FODMAP diet. It is restrictive. No gluten, dairy, high fructose corn syrup. The idea is to follow for a couple weeks then slowly add foods to figure out what may be a problem for you. These were both helpful. The doctor asked if I had ever tried a tap water enema or suppositories when I had problem fully evacuating. I had to do an enema for one of the tests he ordered and felt good the whole day. I have been daily tap water enemas ever since. The doctor says they are no problem and safe. It has given me quality of life. It takes about 30 minutes a day, and I'm good until the next morning when I do my next enema. I can eat what I want, have control of when I go, and don't have to worry about where the restroom is or having to go when I'm out.

There are many options as it will take time to find what works best for you. Everyone is different. Some have great success right out of the gate. Others do well with controlling diet, taking anti diarrheal meds, Metamucil or Citrucel. Others had opted to get a permanent colostomy. There are exercises you can do ahead of time to strengthen you sphincter muscle as well. I tried many things and the daily enema was what has worked best for me. Try not to worry as you may do very well. When the time comes, there are many on this forum that can provide advice on what has worked best for them. Right now focus on your surgery and any treatment you may be going through after.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. 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 onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: Low rectal tumor without LARS?

Postby NHMike » Thu Oct 26, 2017 9:55 am

susie0915 wrote:My tumor was 5 cm above anal verge. I did experience frequent bowel movements for about a year after reversal. Never had problems with not being able to hold it, just went a little bit often. I went to the bowel control clinic at University of Michigan. The doctor recommended pelvic floor physical therapy and meeting with a dietician. The dietician recommended the low FODMAP diet. It is restrictive. No gluten, dairy, high fructose corn syrup. The idea is to follow for a couple weeks then slowly add foods to figure out what may be a problem for you. These were both helpful. The doctor asked if I had ever tried a tap water enema or suppositories when I had problem fully evacuating. I had to do an enema for one of the tests he ordered and felt good the whole day. I have been daily tap water enemas ever since. The doctor says they are no problem and safe. It has given me quality of life. It takes about 30 minutes a day, and I'm good until the next morning when I do my next enema. I can eat what I want, have control of when I go, and don't have to worry about where the restroom is or having to go when I'm out.

There are many options as it will take time to find what works best for you. Everyone is different. Some have great success right out of the gate. Others do well with controlling diet, taking anti diarrheal meds, Metamucil or Citrucel. Others had opted to get a permanent colostomy. There are exercises you can do ahead of time to strengthen you sphincter muscle as well. I tried many things and the daily enema was what has worked best for me. Try not to worry as you may do very well. When the time comes, there are many on this forum that can provide advice on what has worked best for them. Right now focus on your surgery and any treatment you may be going through after.


My surgeon mentioned the possibility of problems after reversal and I asked about muscles down there and she said that mine were in good shape but that I could do Kegels if I wanted some improvement. Lots of great stuff in these posts in dealing with it - good to know but I'm not deep into the details as this will likely be springtime for me.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

del
Posts: 47
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Low rectal tumor without LARS?

Postby del » Tue Nov 14, 2017 7:51 am

Mine was ultra-low (from memory, 5 cm from the verge). I had a lot of the same fears as you after reading some horror stories and was seriously contemplating asking my surgeon whether I could permanently keep the ileostomy bag. But my reversal surgery was 12 months ago and life has pretty much gone back to normal for me. I work full time, do lots of travelling, hiking, jogging, scuba diving and swimming. I just recently came back from an 8 day hiking trip in Africa, where I was hiking for up to 12 hours a day and sleeping in a tent and didn't have any problems whatsoever. The first month or two after the reversal were a bit rough at times and I have had to adjust a few things but, for me, it has been completely manageable and every month seems to be better. There is hope! :D
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-08 - Clean CT
2016-11 - Ileostomy reversal
2017-03 - Clean CT & colonoscopy
2017-09 - Clean CT

hawkowl
Posts: 46
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Low rectal tumor without LARS?

Postby hawkowl » Tue Nov 14, 2017 3:30 pm

Mine was extremely low (0.5 cm from the verge) and there was simply no way to get an adequate margin without compromising the sphincter integrity. I like to travel and spend a lot of time far from bathrooms, so LARS was something I really wanted to avoid.

I did have a complete clinical response to neoadjuvant therapy and was offered a non operative watch and wait approach, but I just wasn't comfortable with the idea
Ultimately I opted for an APR, with permanent colostomy. My pathology showed a complete pathological response as well but I am still happy with my decision.

I can travel, be active, spend all day away from bathroom access and still enjoy an excellent quality of life. I know this is not the right decision for everyone, but it is good to have a realistic idea of what to expect, and make a decision that is right for you (i know many want to avoid a permanent ostomy at all costs, but for me, peace of mind and quality of life were much higher priorities.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

rockhound
Posts: 34
Joined: Fri Jul 14, 2017 5:00 pm

Re: Low rectal tumor without LARS?

Postby rockhound » Tue Nov 14, 2017 4:41 pm

I don't at all regret having my ileostomy reversed- nearly two months out now. I've started taking 1/2 immodium pill in the morning and that coupled with the metamucil I'm taking still, is seeming to keep things somewhat "regular." Maybe minor LARS, but I basically go in the morning after eating breakfast/getting up (~30 minutes of back and forth to toilet) and something similar in the evening. Occasional toilet trip during the day, but not anything big. This has allowed me to start back swimming ~1000-2000 yds for 25-40 minutes without worrying about accidents, and basically all other normal stuff. I am not at all keeping track of what I eat w/respect to how it impacts my bowel function- my philosophy after all the crap I've been through for treatment, etc. is to enjoy food at this point :). I anticipate also being able to hike, camp in a tent in wilderness situations, etc. Traveled on a plane (~3.5 hrs) and back for a professional conference three weeks ago and that was a huge mental step forward- no major issues on that trip, so looking forward to traveling again also. The first few weeks were rough, but like del mentioned, things are getting better.

My tumor was ~6cm from the verge, but don't remember for sure (~24 cm of rectum/sigmoid was removed so lots of rectum). Kegels probably did help before the reversal and I believe my surgeon did a great job too keeping things as intact as possible. Was worried reading prior to the reversal about whether I would need a permanent ostomy, but in all reality, you really will not know how things are until you are dealing with the recovery. At this point, looking back, I would not do anything different either (a permanent colostomy would have been fine too).
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

ams5796
Posts: 2270
Joined: Fri Feb 06, 2009 10:07 am

Re: Low rectal tumor without LARS?

Postby ams5796 » Tue Nov 14, 2017 5:38 pm

I think many of our problems result from radiation as well as how low the tumor was.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met


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