Positive Quality Life after LAR

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jedimomof3
Posts: 4
Joined: Thu Jul 26, 2018 12:47 am

Positive Quality Life after LAR

Postby jedimomof3 » Fri Aug 03, 2018 9:38 pm

I'm very new to this forum and I've appreciated the posts that I've read. I'm a 39 yo mom, I was diagnosed with a Stage 2 T2-3 Rectal tumor 5 cm from anal verge. I've elected to stop radiation because of the side effects. Everything still works as of now, no pain, just lots of running to the bathroom. I'm scheduled to have a LAR in 2 1/2 weeks and I'm terrified that I'm going to have terrible quality of life after. I'm a very active person. Everything that I read is about how awful it is afterward. I'm hoping that a few people are satisfied with their results, not just tolerating them. Looking for reassurance that life can be ok after cancer.
Last edited by jedimomof3 on Sat Aug 04, 2018 7:26 pm, edited 1 time in total.
39 F - Mom of 3=13,12,8
Jan-May 2018-Rectal Bleeding
6-11-18 coloscopy/CT same day
Stage 2 rectal Cancer, T2-3
CEA 5.6
6-18 PET Scan, possible nodes
7-3-18 port placement
7-9-18 start rad & xeloda
7-17-18 decide rad isn't for me, stop treatment
7-25-18 get 2nd opinion
7-27-18 pelvic MRI w/contrast, nodes look clean
8/6/18 genetic results in
neg for colorectal cancer, positive for BRCA1
8-14-18 LAR, temp Ileostomy

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: Positive Quality Life after LAP

Postby heiders33 » Sat Aug 04, 2018 8:08 am

I went through it all - chemo, radiation, LAR - and now that I am on the other side I am very happy with my QOL. During and after radiation, I was running to the bathroom a lot like you are, but a year later that is no longer the case. Yes, I do go to the bathroom more than I used to before all this, but it's manageable and I never have accidents. I'm able to control my bowel function through diet, with the occasional Immodium. I do have flareups sometimes, but they are usually quick to pass, and I can identify what caused them (some Thai curry paste in the fridge comes to mind). I had an experienced, board-certified colorectal surgeon do my surgery, and I couldn't be happier. I also did a lot of pelvic floor exercises to strengthen those muscles. I know everyone is different, but I hope my story is encouraging to you!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

jedimomof3
Posts: 4
Joined: Thu Jul 26, 2018 12:47 am

Re: Positive Quality Life after LAR

Postby jedimomof3 » Sat Aug 04, 2018 8:42 pm

Thank you so very much! I'm hoping that I get a result like yours!
39 F - Mom of 3=13,12,8
Jan-May 2018-Rectal Bleeding
6-11-18 coloscopy/CT same day
Stage 2 rectal Cancer, T2-3
CEA 5.6
6-18 PET Scan, possible nodes
7-3-18 port placement
7-9-18 start rad & xeloda
7-17-18 decide rad isn't for me, stop treatment
7-25-18 get 2nd opinion
7-27-18 pelvic MRI w/contrast, nodes look clean
8/6/18 genetic results in
neg for colorectal cancer, positive for BRCA1
8-14-18 LAR, temp Ileostomy

User avatar
CRguy
Posts: 9567
Joined: Sun Feb 10, 2008 6:00 pm

Re: Positive Quality Life after LAR

Postby CRguy » Sat Aug 04, 2018 10:54 pm

I had a low LAR in 2007

still here kicking ASS and taking names !!!!! :mrgreen:

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Foreveryoung
Posts: 15
Joined: Thu Jun 22, 2017 9:39 am

Re: Positive Quality Life after LAR

Postby Foreveryoung » Sun Aug 05, 2018 8:30 am

I actually just had my ileostomy reversal two weeks ago, and I have to say, living with an ostomy wasn't bad at all.

I had my LAR April of this year. It took maybe a few weeks to get used to changing the bag, and with little planning. But in just four weeks after the procedure, I traveled to Asia ( HK, Malaysia, Taiwan) for three weeks without any issues.

I was 33 when dx and live a very healthy lifestyle. While I can't be as active as I once was, I know I'll get back to 100% with time.

Best of luck!
33 y/o M DX June 2017 (RC lower)
Rectal adenocarcinoma (T3N0M0)
CAPOX - 3 months (OX chemo every three weeks, followed by two weeks daily CAP pills)
chemoRT - 25 daily sessions
LAR robotic with temp loop ileo - April 4, 2018
0/23 Nodes
Illeostomy reversal - July 25, 2018
8.0 cm from AV
4.3 cm from sphincter complex
CEA [2.5 on 8/17; 3.7 on 3/18; 2.8 on 6/18]

User avatar
O Stoma Mia
Posts: 1363
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Positive Quality Life after LAR

Postby O Stoma Mia » Sun Aug 05, 2018 10:21 am

Have you looked into TAMIS?
http://tamisurgery.com/options

jedimomof3
Posts: 4
Joined: Thu Jul 26, 2018 12:47 am

Re: Positive Quality Life after LAR

Postby jedimomof3 » Sun Aug 05, 2018 1:30 pm

That is an interesting option, the unfortunate part is that my tumor is about 80% circumferential. So, I don't believe that TAMIS would work in my case. The Doctor that I'm using at the Huntsman Cancer Hospital is planning on doing the whole procedure using minimally invasive techniques. So at least it's not open. Thanks! You all are great!
39 F - Mom of 3=13,12,8
Jan-May 2018-Rectal Bleeding
6-11-18 coloscopy/CT same day
Stage 2 rectal Cancer, T2-3
CEA 5.6
6-18 PET Scan, possible nodes
7-3-18 port placement
7-9-18 start rad & xeloda
7-17-18 decide rad isn't for me, stop treatment
7-25-18 get 2nd opinion
7-27-18 pelvic MRI w/contrast, nodes look clean
8/6/18 genetic results in
neg for colorectal cancer, positive for BRCA1
8-14-18 LAR, temp Ileostomy

NHMike
Posts: 1557
Joined: Fri Jul 21, 2017 3:43 am

Re: Positive Quality Life after LAR

Postby NHMike » Sun Aug 05, 2018 7:48 pm

Foreveryoung wrote:I actually just had my ileostomy reversal two weeks ago, and I have to say, living with an ostomy wasn't bad at all.

I had my LAR April of this year. It took maybe a few weeks to get used to changing the bag, and with little planning. But in just four weeks after the procedure, I traveled to Asia ( HK, Malaysia, Taiwan) for three weeks without any issues.

I was 33 when dx and live a very healthy lifestyle. While I can't be as active as I once was, I know I'll get back to 100% with time.

Best of luck!


I felt better with the Illeostomy compared to where I am now (reversal a week ago). I'm hoping that things get a lot better but don't know how long that will take.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Phillypatient
Posts: 9
Joined: Sun Aug 05, 2018 11:28 am

Re: Positive Quality Life after LAR

Postby Phillypatient » Sun Aug 05, 2018 8:27 pm

I think surgeons generally underestimate the impact of this surgery on patients. Perhaps LARS manifests itself different in individuals so it’s hard to say what to expect. I had my reversal in Dec 2017 and there are many days where I would have taken my 1 year with my otherwise healthy body than many years in my current state. I never had a serious illness before this so maybe this is just the process of getting older. Pre surgery, I was in pretty good shape ( daily hot yoga, no sugar, plenty of sleep, healthy diet, and most important of all, 5 minutes in the bathroom daily). Nowadays, I spend 5 plus hours in the bathroom, many times in the middle of the night. I have no routine whatsoever which is rather frustrating. I generally have to plan much in advance to leave the house. Also, spending that much time on the toilet has its own effects...one piece of advice I wish someone had told me is to get a bidet before your reversal. I hope you journey will be much better. I also feel it’s important to hear the other side of the possible outcomes and know you are not alone.
Good luck
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

Gravelyguy
Posts: 21
Joined: Thu Jul 05, 2018 6:03 pm

Re: Positive Quality Life after LAR

Postby Gravelyguy » Sun Aug 05, 2018 8:54 pm

I am 6 weeks out. It is already getting better. I have more good days than bad. Today I went in the morning, went to church and my daughters 2 hour water ski show with no issues. Came home and went again. 3 weeks ago I had all kinds of issues at her last show. Today was as normal as they come. A good sense of humor helps in all circumstances!

I also take a good probiotic, lots of water, and have gone back to a fairly low carb diet. I think they all help a significant amount.

Hope this helps,

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
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown

Foreveryoung
Posts: 15
Joined: Thu Jun 22, 2017 9:39 am

Re: Positive Quality Life after LAR

Postby Foreveryoung » Mon Aug 06, 2018 10:56 am

Gravelyguy wrote:I am 6 weeks out. It is already getting better. I have more good days than bad. Today I went in the morning, went to church and my daughters 2 hour water ski show with no issues. Came home and went again. 3 weeks ago I had all kinds of issues at her last show. Today was as normal as they come. A good sense of humor helps in all circumstances!

I also take a good probiotic, lots of water, and have gone back to a fairly low carb diet. I think they all help a significant amount.

Hope this helps,

Dave



Thanks Dave for the tips. Like Mike, I had my reversal fairly recently (7/25). Going to see my surgeon tomorrow and dreading the silver nitrate application over the wound.

I am taking probiotics, but currently on a low residue/fiber diet. I think my dr will change it up after he sees me tomorrow. Any other tips to control BM? I go upwards of 20+ times a day and am not man enough to get an adult diaper.

Best,
33 y/o M DX June 2017 (RC lower)
Rectal adenocarcinoma (T3N0M0)
CAPOX - 3 months (OX chemo every three weeks, followed by two weeks daily CAP pills)
chemoRT - 25 daily sessions
LAR robotic with temp loop ileo - April 4, 2018
0/23 Nodes
Illeostomy reversal - July 25, 2018
8.0 cm from AV
4.3 cm from sphincter complex
CEA [2.5 on 8/17; 3.7 on 3/18; 2.8 on 6/18]

erins
Posts: 19
Joined: Sun May 27, 2018 12:41 pm

Re: Positive Quality Life after LAR

Postby erins » Mon Aug 06, 2018 11:25 am

I’m about 2 and 1/2 months out— I didn’t have chemo or radiation, and my tumor was in my sigmoid colon, so it’s a different situation, but I’d say the LAR improved my quality of life.

Like others I found that probiotics and water helps with recovery—i brought one of those slippy laundry bags to help me twist out of bed, which helped a lot. I also found that the worst pain was from nerve irritation due to the gas they use to inflate the abdomen (apparently it irritates the nerves in your diaphragm, but your brain interprets it as shoulder pain since the nerves are connected—the nurses were ready for it and gave me heat compresses for my shoulders, but if I’d gone home earlier I’d have likely gone back into the ER for pain—the heat worked perfectly, but the drugs didn’t even touch it).

I’m about your age and recovered really fast—sometimes surgeons aren’t quite ready for that, so make sure you take your time—technically I could’ve gone home the day After my surgery, but fortunately my surgeon kept me the ‘standard’ two nights—I’d not have known about the shoulder thing otherwise. The nurses are excellent for giving tips and advice on self care—ask them all the questions you have, because they tend to have seen just about everything.

Good luck!
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Positive Quality Life after LAR

Postby Caat55 » Mon Aug 06, 2018 9:32 pm

jedimomof3 wrote:I'm very new to this forum and I've appreciated the posts that I've read. I'm a 39 yo mom, I was diagnosed with a Stage 2 T2-3 Rectal tumor 5 cm from anal verge. I've elected to stop radiation because of the side effects. Everything still works as of now, no pain, just lots of running to the bathroom. I'm scheduled to have a LAR in 2 1/2 weeks and I'm terrified that I'm going to have terrible quality of life after. I'm a very active person. Everything that I read is about how awful it is afterward. I'm hoping that a few people are satisfied with their results, not just tolerating them. Looking for reassurance that life can be ok after cancer.



I think the LAR, ileostomy is very manageable. I swam, exercised, traveled on planes, vacationed in NYC without incident. The mop up chemo complicated things more than I could have guessed.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds


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