My California LAR Story

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Sanjuro
Posts: 10
Joined: Tue Nov 22, 2016 11:11 pm

My California LAR Story

Postby Sanjuro » Mon Nov 06, 2017 2:32 pm

Hi,

I recently had Lower Anterior Resection surgery in Southern California. In the interest of sharing useful information for people that come to this site seeking support, I would like to share my story. I found this forum very helpful and I want to give back in some small way.

I had rectal bleeding; I was examined via a rigid sigmoidoscopy followed by a colonoscopy and diagnosed with colorectal cancer. I quickly went in for an additional flex-sig / ultrasound and ct scan. The doctors believed the tumor was a T2N0. The referring Colorectal surgeon said I needed an Anterior Resection (possibly a LAR.) The news that I had cancer was tough; coping with the potential for the quality of life issues after surgery made things tougher.

I immediately went about getting a second opinion… rather... second opinions. My proctologist said that radiation and chemo would not be necessary but I needed the LAR. I spoke with three surgeons in the So-Cal area and I finally settled on Dr Kevork Kazanjian at UCLA. I felt the most comfortable with Dr Kazanjian, he is the head of the colorectal cancer department at UCLA Westwood and I had a personal referral. I can not say enough good things about Dr Kazanjian, he and his team have been great throughout the whole process. I interviewed surgeons in the So-Cal area before settling on Dr K, including surgeons at USC and Cedar-Sinai. If you have questions about my experience with various surgeons, do hit me up. I have to say I really liked Dr Kaiser’s style at USC as well; he came recommended by an individual on this board. I saw a few other surgeons that I felt looked at me as a pay-check. If the doctor insists on examining you when you’ve already been diagnosed, it may be for a quick buck.

My LAR surgery was early in the morning. I arrived at UCLA and signed in. I was taken to the pre-op area and changed into my gown. I had showered with CHG soap two days prior and the morning of as advised by Dr Kazanjian’s team. They gave me an epidural; I’m glad I decided to go this route as I did not experience very much pain. My wonderful and supportive girlfriend was with me the entire time, until I was taken to the operating room. I opted for robotic surgery; I saw the robot as I went into the operating room. They put me out and I woke up about 7 hours later (the LAR itself does not take this long, but they placed a temporary diverting loop ileostomy as well.) Naturally, I was hoping to avoid the Ileostomy; it was the first thing I checked post surgery as they rolled me down the hospital hall and I was still in a bit of a funk from the anesthesia. I was unhappy about the Ileostomy, but all-in-all it wasn’t that big a hassle for the two months or so that I had it. My thumbs were numb, likely because I’d pinched a nerve while my arms were extended during surgery. The numbness went away after about 24 hours. I was quite concerned about the potential for post-op issues with urination and sexual function. I was thinking about this a bit the first few days in the hospital; by the time the nurse arrived to take the catheter, I was really ready to have it out and try urinating. I was very relieved (pun intended) that everything worked as expected; that goes for sexual function as well. The good news after surgery was: clean margins; the tumor was a T1N0.

One thing to mention is that I did vomit after returning home from surgery. My stomach was in knots; I thought my ileostomy may have been blocked. It turned out that the Imodium I was taking really shut-down my digestion. I spoke with the doctor, stopped taking the Imodium and was ok after that.

About 6 weeks after LAR surgery I went in for a gastrografin enema study. In order to be sure that you’ve healed adequately and that there is no leak at the anastomosis, ex-rays are taken while fluid is put into your body via an enema. It was not all that fun; it upset my stomach a bit and the fluid came out of my ileostomy bag. I got through it. The doctor conducting the enema said some things that troubled me a bit; in the end, the surgeon looked it over and said everything was normal. I was set to have the ileostomy taken down.

Ileostomy take down was a quick surgery. The days that followed in the hospital were nerve-racking as I was again worried about post-op quality of life; specifically LARS (Lower Anterior Resection Syndrome.) I burped a lot the first few days and my stomach felt a bit funny; eventually my bowel came to life and I had a really liquidy bowel movement. I believe it was two days after surgery. After I got home I had a few (two?) more liquidy bowel movements, but they became very normal sold bowel movements very soon. I now use the bathroom more frequently (let’s say 2-3 times a day) and some foods cause me to go more often. I have not experienced major LARS symptoms.

Advice - for anyone facing this situation my heart goes out to you. Cancer is scary and I often found myself asking “why me” or “how did this happen to me”? The bottom line is that you’ve got to get it taken care of. Here is my advice.

- If you have rectal bleeding, go for the colonoscopy, even if you’re young. It may not be hemorrhoids. I was worried about the colonoscopy procedure and the potential for infection which caused me to delay a bit; do ask lots of questions of the hospital staff and do you research, but get the colonoscopy.
- Get organized, get all of your documents (diagnosis, result of colonoscopy, etc…) and digital info (ct scan) organized, stick it in a folder and on a usb drive. Have it with you when you visit surgeons / hospital facilities.
- If you must go for surgery, speak to board certified colorectal surgeons. My advice is to interview several. Write down a list of questions about the procedure, the risk potential, quality of life concerns. Ask these questions of all of the surgeons. Meet with them multiple times if necessary. Use google to check out the surgeons; use colon talk to do research. Understand what you’re getting into. Determine which surgeon one you are comfortable with.
- Live your life, have fun every day and spend time with the people you love most.

That’s it. Feel free to reach out if you have any questions.

Sanjuro
40 / Male
Colon Cancer in the recto-sigmoid junction. Lesion is non aggressive: T2N0, ~5cm x 2.5cm in size, 13cm from the anal verge.
Lynch status: negative
LAR w/ Diverting Ileostomy Dec 2016
Post-Surgery Pathology: T1N0, clean margins, NED
Clean Colonoscopy Nov 2017

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: My California LAR Story

Postby Lee » Mon Nov 06, 2017 7:11 pm

Thank you for sharing your journey with us. It just might help someone who is just starting this journey, reading this forum for answers.

Good luck,

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 - 16 years and counting!

AlexMichelle
Posts: 43
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: My California LAR Story

Postby AlexMichelle » Wed Nov 08, 2017 3:37 am

Sanjuro, great notes. Very helpful. It really is a scary road. Thanks for sharing.
F 9/14/17 blood, 10/05/17 endoscopy/colonoscopy 4.5 cm tumor lower colon/upper rectum/left side -11/09/17 open Rectosigmoid Colon Resection remove invasive adenocarcinoma, moderately diff marg clear.15 lymph nodes neg malignancy. benign liver w/fibrous nodule- rectum at 15cm Tumor location: above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm. pT2pNO Stage 1. No Lynch

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: My California LAR Story

Postby ocstacy » Thu Nov 09, 2017 3:18 am

have to say I really liked Dr Kaiser’s style at USC as well; he came recommended by an individual on this board. I saw a few other surgeons that I felt looked at me as a pay-check. If the doctor insists on examining you when you’ve already been diagnosed, it may be for a quick buck.


Sanjuro,

Konichi-wa? My name is Stacy and my mother and her family are from Japan. You and I are the same age. I had to argue with 3 Dr. to get my colonoscopy approved so that my insurance could pay. My mother was DX with stage 3 rectal CA May 2017. She just had her LAR surgery and wow, what a tough recovery. We went to USC Keck and chose Dr. Lee, Chief surgeon. We were self referred by myself, and through Yelp.com. UCLA was 2nd on our list and I see that you chose a wonderful Doctor with great reviews as well. I interviewed several Dr too and had to switch my mom's insurance around for her to be accepted at certain hospitals, etc. My mom's cancer shrunk so much they think they got it all (thank goodness!) Thank you for sharing
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: My California LAR Story

Postby ocstacy » Thu Nov 09, 2017 3:18 am

have to say I really liked Dr Kaiser’s style at USC as well; he came recommended by an individual on this board. I saw a few other surgeons that I felt looked at me as a pay-check. If the doctor insists on examining you when you’ve already been diagnosed, it may be for a quick buck.


Sanjuro,

Konichi-wa? My name is Stacy and my mother and her family are from Japan. You and I are the same age. I had to argue with 3 Dr. to get my colonoscopy approved so that my insurance could pay. My mother was DX with stage 3 rectal CA May 2017. She just had her LAR surgery and wow, what a tough recovery. We went to USC Keck and chose Dr. Lee, Chief surgeon. We were self referred by myself, and through Yelp.com. UCLA was 2nd on our list and I see that you chose a wonderful Doctor with great reviews as well. I interviewed several Dr too and had to switch my mom's insurance around for her to be accepted at certain hospitals, etc. My mom's cancer shrunk so much they think they got it all (thank goodness!) Thank you for sharing
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: My California LAR Story

Postby KathyLynn » Fri Nov 10, 2017 11:50 am

Thank you so much for the information. I’ll be having surgery soon, robotic LAR. This was very helpful
Hope you are doing well

KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED
06/21 CT NED CEA 1.3

kran
Posts: 3
Joined: Thu Oct 19, 2017 7:24 am

Re: My California LAR Story

Postby kran » Sat Nov 25, 2017 9:41 pm

THANK YOU! My surgery is in 2 weeks and I'm really uptight about it. My biggest worries: how will I feel? will I be up to participating in the holidays, just 2 weeks later (my kids are coming to town)? Will I have embarrassing accidents with the ostomy? I guess I'm not as worried about pain as I am about nausea, embarrassment, depression. No one is prepared... for THIS. I appreciate the support here.

Sanjuro
Posts: 10
Joined: Tue Nov 22, 2016 11:11 pm

Re: My California LAR Story

Postby Sanjuro » Sun Nov 26, 2017 8:49 pm

Thanks for all the replies Lee, AlexMichelle, Stacy, KathyLynn and kran. I'm keeping all of you in my thoughts and sending positive vibes!

I'm happy to report that I went for a colonoscopy (about a year after the original diagnosis) and everything looks good! I still have "NED" status.

Regarding post-operation preparedness:
I didn't have any accident problems after surgery really. After the LAR I did have to take care of my ileostomy for a few months, which presented a few headaches but it wasn't the worst. You just have to stay on top of it and change the ileostomy bag. There is a spectrum of potential post-op quality of life issues; LARS is worth reading about for anyone that will have an anterior resection (have a look at this board.) After ileostomy reversal, I do notice minor differences in my bowel movements, I have them more frequently and I can be pretty gassy. One night I had the use the bathroom several times. For the most part it's fine, I would not say I have LARS. Everyones experience is different.

As always feel free to hit me up with a message if there is any advice I can provide.
40 / Male
Colon Cancer in the recto-sigmoid junction. Lesion is non aggressive: T2N0, ~5cm x 2.5cm in size, 13cm from the anal verge.
Lynch status: negative
LAR w/ Diverting Ileostomy Dec 2016
Post-Surgery Pathology: T1N0, clean margins, NED
Clean Colonoscopy Nov 2017

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: My California LAR Story

Postby ocstacy » Mon Dec 04, 2017 4:14 am

After ileostomy reversal, I do notice minor differences in my bowel movements, I have them more frequently and I can be pretty gassy. One night I had the use the bathroom several times. For the most part it's fine, I would not say I have LARS. Everyones experience is different.

As always feel free to hit me up with a message if there is any advice I can provide


Hi there,

Do you know how long it took for surgery for the reversal? I heard 1 hour or so, but is that true? Do you miss the pouch or like the reversal better? What type of chemo did you do prior to the reversal? Sorry for so many questions.. hope your well!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Sanjuro
Posts: 10
Joined: Tue Nov 22, 2016 11:11 pm

Re: My California LAR Story

Postby Sanjuro » Sun Jan 07, 2018 10:56 am

No problem. I didn't need to do chemo prior to reversal. Various tests found that nothing had reached lymph-nodes and the tumor had not gone outside the colon wall. I believe that the ileostomy reversal surgery took about 2 hours. I was very happy to have the reversal completed; I still feel that way.

Keeping you in my thoughts.
40 / Male
Colon Cancer in the recto-sigmoid junction. Lesion is non aggressive: T2N0, ~5cm x 2.5cm in size, 13cm from the anal verge.
Lynch status: negative
LAR w/ Diverting Ileostomy Dec 2016
Post-Surgery Pathology: T1N0, clean margins, NED
Clean Colonoscopy Nov 2017

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: My California LAR Story

Postby DarknessEmbraced » Wed Jan 10, 2018 1:06 pm

I'm glad you're doing well!*hugs* Congratulations on clear colonoscopy!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: My California LAR Story

Postby ocstacy » Fri Jan 12, 2018 12:39 am

I believe that the ileostomy reversal surgery took about 2 hours. I was very happy to have the reversal completed; I still feel that way.


Very happy to hear this. Did you have do the clean up chemo prior to your reversal like Xeloda? My mom has to do the Xeloda for 4 months than reversal.


Thank you,

S
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Sanjuro
Posts: 10
Joined: Tue Nov 22, 2016 11:11 pm

Re: My California LAR Story

Postby Sanjuro » Tue Apr 17, 2018 6:13 pm

Thanks everybody! Hugs!

They didn't have me do any chemo at any point. The tumor was a T1N0; the doctors didn't think it was necessary. I did ask multiple surgeons about this; they all had the same recommendation.
40 / Male
Colon Cancer in the recto-sigmoid junction. Lesion is non aggressive: T2N0, ~5cm x 2.5cm in size, 13cm from the anal verge.
Lynch status: negative
LAR w/ Diverting Ileostomy Dec 2016
Post-Surgery Pathology: T1N0, clean margins, NED
Clean Colonoscopy Nov 2017


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