APR surgery for low rectal tumor

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_Jelen90
Posts: 9
Joined: Sat Jan 19, 2019 7:12 pm

APR surgery for low rectal tumor

Postby _Jelen90 » Wed May 15, 2019 1:27 pm

Hi everyone,

I need some feedback from people who had the APR surgery for low rectal tumor. Our surgeon told us it was the only option for my husband but I am also seeing a lot of people on here had the LAR surgery even with a very low tumor so I am kinda confused. I know it's a major surgery with a lot of risks and a super long recovery. I am scared to death to be honest.My husband had his first follow up 6 weeks after his chemorad was finished and the tumor went from 3 cm to less than 1.5 cm. The surgeon wants to wait another 7 weeks as he thinks it might shrink even more.
21/12/2018 DH 28 diag. Rectal cancer T2N1M0
6 weeks of Chemorad Jan-March 2019
Surgery scheduled June 12

Eleda
Posts: 293
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: APR surgery for low rectal tumor

Postby Eleda » Wed May 15, 2019 2:38 pm

I had a TATME for a 3cm tumor 2.5xm above AV, Minimal down time
Temporary illeostomy
So it's not the only option..... but there may be other factors at play as to why they want to go this road for ur husband

ADELE x
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Gravelyguy
Posts: 163
Joined: Thu Jul 05, 2018 6:03 pm

Re: APR surgery for low rectal tumor

Postby Gravelyguy » Wed May 15, 2019 3:01 pm

I was told by the first 2 surgeons that APR was the only option. I was ok with that if that allowed me to spend more time with my family. It wasn't until I was referred to Mayo for my liver mets and was asked to see one of their colorectal surgeons that the possibility of ULAR was even brought up. The liver surgeon referred me to THE guy who thought it might be possible to do it. After 4 rounds of chemo and short course radiation they were able to avoid APR. According to the discharge Dr. not very many surgeons could have done what he did.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
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
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

_Jelen90
Posts: 9
Joined: Sat Jan 19, 2019 7:12 pm

Re: APR surgery for low rectal tumor

Postby _Jelen90 » Wed May 15, 2019 3:18 pm

Eleda wrote:I had a TATME for a 3cm tumor 2.5xm above AV, Minimal down time
Temporary illeostomy
So it's not the only option..... but there may be other factors at play as to why they want to go this road for ur husband

ADELE x


Where do you live Adele ??? We are in Edmonton, Canada...I'm not even sure if that's offered here :S
21/12/2018 DH 28 diag. Rectal cancer T2N1M0
6 weeks of Chemorad Jan-March 2019
Surgery scheduled June 12

Eleda
Posts: 293
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: APR surgery for low rectal tumor

Postby Eleda » Wed May 15, 2019 3:52 pm

Hi,,,
I'm living in Ireland,,,,!!
It's not a new technic , but very effective,,,,
I had my surgery in May and was n Spain on holiday in July/Aug and Oct ... Not a bother ( appart from the bag slipping in the heat :evil: :evil: :evil:

Maybe you could reaserch and see if there is a surgon in ur area doing lap surgery,,,,,
Is it a board certified Colorectal surgon you are attending??

This is so important,,it's such a delicate area and nerve preservation surgery is the main thing

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

_Jelen90
Posts: 9
Joined: Sat Jan 19, 2019 7:12 pm

Re: APR surgery for low rectal tumor

Postby _Jelen90 » Wed May 15, 2019 4:03 pm

Eleda wrote:Hi,,,
I'm living in Ireland,,,,!!
It's not a new technic , but very effective,,,,
I had my surgery in May and was n Spain on holiday in July/Aug and Oct ... Not a bother ( appart from the bag slipping in the heat :evil: :evil: :evil:

Maybe you could reaserch and see if there is a surgon in ur area doing lap surgery,,,,,
Is it a board certified Colorectal surgon you are attending??

This is so important,,it's such a delicate area and nerve preservation surgery is the main thing

ADELE X



Thanks for your reply Adele :)..he is a board certified colorectal surgeon and he's supposed to be one of the best ones. We have an appointment with him on the 31st and will have to clarify a few things I think..plus his surgery is booked very close to my due date...fun fun
21/12/2018 DH 28 diag. Rectal cancer T2N1M0
6 weeks of Chemorad Jan-March 2019
Surgery scheduled June 12

ozziej
Posts: 235
Joined: Thu May 21, 2015 8:35 pm

Re: APR surgery for low rectal tumor

Postby ozziej » Thu May 16, 2019 1:13 am

Having had a ULAR myself, and now having Low Anterior Resection Syndrome (LARS), I would suggest that you fully explore the possibility that your husband may well end up with LARS if his tumour is extremely low.. Recent research suggests that people with a permanent colostomy have as good as, or even better, quality of life than those who have major LARS. It's important to understand that the lower the anastomosis, the greater the risk of LARS. With a ULAR, we are talking in the range of upwards of 80% who will develop LARS. Add in radiation and that increases the risk again. It is a lottery. Hopefully your husband might be in that small percentage who don't develop the syndrome. If fear of the bag is an issue, I would suggest reading Miss Molly's excellent post re permanent colostomy on this board.
Best wishes for a smooth recovery whichever direction you take.
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!! : )

hawkowl
Posts: 119
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: APR surgery for low rectal tumor

Postby hawkowl » Thu May 16, 2019 4:05 am

I had an ultra low rectal tumor and a complete response to neoadjuvant chemo followed by chemo radiation. I was offered watch and wait but because I had suck extensve lymph node involvement including distant nodes I was more comfortable with surgery.

LAR surgery would have almost certainly led to bad LARS due to my very low lying tumor so I chose APR plus colostomy and have zero regrets. The bag is no big deal and allows me to travel and me be active. No bathroom? No problem
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.
6/2018 CEA still normal.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

NHMike
Posts: 1969
Joined: Fri Jul 21, 2017 3:43 am

Re: APR surgery for low rectal tumor

Postby NHMike » Thu May 16, 2019 9:50 am

Radiation continues working after the last dose so that is why the surgeon wants to wait.

I had a LAR and have LARS issues. The surgeon does offer a Colostomy alternative but I want to see if I can make things work without it.
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; 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, 2/12 1.2
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
2/19: Clean CT

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: APR surgery for low rectal tumor

Postby aja1121 » Thu May 16, 2019 10:42 am

I would also recommend a second opinion. APR is is a big surgery and takes quite a while to recover, so I'd want to be 100% sure that a less invasive option wouldn't be possible before moving forward. My husband originally had LAR, then APR due to local recurrence.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

Soccermom2boys
Posts: 205
Joined: Tue Nov 10, 2015 10:29 pm

Re: APR surgery for low rectal tumor

Postby Soccermom2boys » Thu May 16, 2019 7:00 pm

I had to have an APR based on the location of my tumor butting up against the anal sphincters. I did the chemo radiation and my surgery was seven weeks afterwards, but not a complete response so I continued on with the surgery as planned. It is initially crushing to hear you will have a permanent colostomy, but over three years later I find it isn’t all that inconvenient, especially compared to those who do suffer from LARS. I went in to the surgery at my healthiest (the irony, eh?!) with running and walking 5-10 miles per day as I wanted my best chance at a decent recovery and it was not as catastrophic as you might think for the level of surgery that it is. I was easily walking a mile in the hospital corridors by the time I was discharged five days later. I do anything and everything I was doing before the surgery as far as activities go. Would I rather my original plumbing, sure? Butt I am happy to be here three plus years later still chugging along. :D I am not trying to tell your husband which way to go, only that life with a permanent colostomy can be just as good as life after a ULAR. Good luck to your husband in his decision. In all honesty, I am glad I didn’t have to decide, it was not an option based on my response to the chemo radiation.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

hart2hart
Posts: 789
Joined: Wed Nov 23, 2011 10:46 pm

Re: APR surgery for low rectal tumor

Postby hart2hart » Thu May 16, 2019 9:45 pm

My Pete had VLR Tumor 11/11. We had 4 opinions.
2 said 80/20 we can save the sphincters, one said 50/50
and said APR. We went with one fantastic, ace-surgeon who spent almost 4 hours hand-sewing the connection since a stapler would not have worked. My hero.
Pete is doing great.....so anyone who has a Very Low
Rectal Tumor please get a few if not more opinions. We realized pretty quick some Doctors could not be bothered to just try. Dr James MCClane from Connecticut with always be my hero along with Dr Kemeny and Dr D’Angelica from MSK! Our lives are fun and full!


Julie and Pete
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - To Current

justin case
Posts: 4245
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: APR surgery for low rectal tumor

Postby justin case » Mon May 20, 2019 3:56 pm

hart2hart wrote:My Pete had VLR Tumor 11/11. We had 4 opinions.
2 said 80/20 we can save the sphincters, one said 50/50
and said APR. We went with one fantastic, ace-surgeon who spent almost 4 hours hand-sewing the connection since a stapler would not have worked. My hero.
Pete is doing great.....so anyone who has a Very Low
Rectal Tumor please get a few if not more opinions. We realized pretty quick some Doctors could not be bothered to just try. Dr James MCClane from Connecticut with always be my hero along with Dr Kemeny and Dr D’Angelica from MSK! Our lives are fun and full!


Julie and Pete
Stamford, CT

That's good to hear !
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012


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