Difficult decision: ULAR or APR?

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del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Difficult decision: ULAR or APR?

Postby del » Thu Mar 10, 2016 10:22 pm

Sorry in advance for the long post! I have rectal resection surgery scheduled for 23 March. My surgeon gave me some good and bad news about the operation yesterday. The good news is that the the CT and MRI came back looking mostly good and I am "probably" at stage 1. The bad news is that they showed that the tumour was very low, 2.5cm above the dentate line. My surgeon laid out 3 options - watch and wait for 3 months, ULAR or APR. He said I have a 90% chance of survival if I watch and wait or 95% if I go for surgery so I am really leaning towards surgery. The ULAR will be difficult due to the location and it will not be possible to staple so he would perform the surgery with the assistance of another surgeon who specialises in hand stitching. There is a higher risk of complications than an APR (the surgeon was mostly worried about anastomotic leaks) or of hitting a nerve or blood vessel that could cause sexual dysfunction or incontinence. It would also require 2 operations rather than one. On the other hand, I am quite an active 33 year old - I regularly run marathons, cycle, swim, scuba dive, go to the beach, etc so I'm worried that an APR with a permanent bag will have a bigger impact on my life, though from what I've read the bags are very good these days and not very restrictive. My surgeon said he spoke to 8 other colorectal surgeons and they were all equally divided on which option to go with. I was really expecting it would more clear cut but my situation just seems so borderline.

Has anyone gone through a similar experience? What guided your decision? And what was the result? Are there any other questions I should be asking or other aspects I should be considering? I am trying to write down all the downsides of each choice and here is what I have come up with:

Watch and wait:

- Lower survival rate
- I will not know the exact stage

ULAR:

- Risk of anastomotic leak
- Risk of sexual dysfunction
- Risk of incontinence
- Higher risk of local recurrence as part of the rectum is left behind?
- Two operations instead of one

APR:

- Lifestyle change

Any info from anyone who has been in this situation would be really, really appreciated as I feel like I am changing my mind every time I think about it!
Last edited by del on Thu Mar 10, 2016 11:50 pm, edited 1 time in total.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2019-04 - Became a dad :)
5 years of clean scopes/scans/bloods

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Difficult decision: ULAR or APR?

Postby PainInTheAss » Thu Mar 10, 2016 11:47 pm

Hello,

I was a IIIc, so APR was a no brainer. I told him to do whatever would give me the best chances to survive. I have a permanent colostomy. Even with all that treatment, I was told my chances were 60%. I was also told that a complete response would boost it to 90%, but I still had trace cancer cells so I did not get my "get out of jail free" complete response card.

Butt... If I were a stage I? Your chances of survival are so high, I would opt for higher quality of life, personally. I would probably want more information, like genetic testing of the cancer cells and any other increase of risk factors. Also, I believe there is a fourth option. I know Jaynee did a procedure that was an excision of some kind and she was a 2A. So, they remove the tissue, I believe, but it's not a full resection...? It's a step up from wait and see but not as invasive as the other two options. TME, I think. Have you already done radiation and you had a complete clinical response? I would explore my options if that's the case. I think you can do pathology after the Excision to verify a complete pathological response. I don't know that much about it... Hopefully, Jaynee will chime in...
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Difficult decision: ULAR or APR?

Postby ozziej » Fri Mar 11, 2016 1:41 am

Hi Del,
As I've noted before, your situation is very similar to mine, except that I had no lymphovascular invasion. My rectal polyp was removed via EMR but was found to be a T2, MRI suggested no lymph node invasion (though only 85% accuracy). I was referred to a colorectal surgeon. As I was a Stage 1 and the polyp had already been completely removed I wasn't offered pre-adjuvant radiation or chemo. The surgeon said I could do watch and wait or a ULAR/APR. With watch and wait I would be reviewed every 3 months. He said that if the lymph nodes really were involved then by the time they picked it up I would only have a 50% chance of curative surgery. As mine was also very low (and he had not done the earlier colonoscopy or EMR) he did say that he would not know whether it would be ULAR or APR until he was looking at my rectum. This was the hardest decision I've ever had to make. I also vacillated back and forth and found the process so stressful that I started to have panic attacks. I finally decided that I wasn't prepared to risk the chance that the lymph nodes really were invaded so I went with surgery. I ended up having the ULAR with a temporary loop ileostomy. The surgeon harvested 25 lymph nodes that were all negative. No post-op chemo. The stoma took a bit of adjusting to but by the end of the three months I could have happily lived with a permanent colostomy. I had my reversal in May 2015 so now 10 months out. There has been frustration and tears but my bowel function has improved a lot and I'm adjusting to my new normal. However, in hindsight, if I had been offered pre-adjuvant radiation and chemo then I would have chosen the watch and wait option. I think it's very important to make a distinction between the post radio complete response watch and wait (Stage 2 and above) and the garden variety watch and wait (Stage 1).
I've traded some quality of life for certainty, but radiation and chemo would have given me certainty with perhaps less reduction in quality of life. Having said that, chemo and radiation are no walk in the park either, so quality of life can also be an issue.
It's a hard decision.
Wishing you all the best.
Jan
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!! : )

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Difficult decision: ULAR or APR?

Postby Jacques » Fri Mar 11, 2016 8:23 am

del wrote:...My surgeon laid out 3 options - watch and wait for 3 months, ULAR or APR...Any info from anyone who has been in this situation would be really, really appreciated as I feel like I am changing my mind every time I think about it!

I have not been in in this particular situation. However, there are a couple of Informed Consent documents that may provide additional information:

Informed Consent - Resection of Rectum (LAR)
https://www.health.qld.gov.au/consent/documents/colorectal_19.pdf

Informed Consent - Abdominoperineal Resection of Rectum (APR)
https://www.health.qld.gov.au/consent/documents/colorectal_01.pdf

Deborah614
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Joined: Tue Jan 27, 2015 10:24 am
Facebook Username: Deborah Melchi

Re: Difficult decision: ULAR or APR?

Postby Deborah614 » Fri Mar 11, 2016 11:52 am

I chose to be as aggressive with cancer as possible. The mere mention of a colostomy at my first consult with the colorectal surgeon caused my head to spin, but it was the best option in my case. I can honestly say I have little to no lifestyle change with the modern appliances available. I'm wearing the same clothes, moving freely and living with my ostomy is the easiest part of all my treatment. Please, don't let fear of living a full, active life with a colostomy be a deciding factor. In the big picture, it's a very small piece, for me.
Sending my best,
Deb
dx 12/17/14
stage 2 rectal cancer T3N0M0
standard treatment 28 days radiation w/xeloda, surgery, 8 rounds Folfox
22 shots neupogen 32 days in hospital for infections
60 years old
mother of 6, grandmother of 10, wife of 1 for 35 years
Jeremiah 29:11
05/28/15 APR, Barbie butt, permanent colostomy
May 2016 Cat scans NED!
May 2016 mammogram
June 2016 invasive ductal carcinoma breast cancer left breast stage1
August3 '16 mastectomy with reconstruction, genetic screening scheduled

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: Difficult decision: ULAR or APR?

Postby Mastan » Fri Mar 11, 2016 3:37 pm

FYI APRs often result in sexual disfunction. I am proof of that. Of course I had .my family many years ago so...

Regarding lifestyle issues with an APR, I was very active with cycling, downhill skiing, and mountain climbing. So no big restrictions except for heavy lifting. You will always be prone to hernia after an APR. I am no longer active because of recurrence and lung surgeries.

My tumor was 1 cm above the anal verge so I did not have the option of an LAR. Your tumor is higher and there are folks on this forum that had successful LARs with that margin. Look into Sloan Kettering.
Dx 6/2010 rectal CA

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: Difficult decision: ULAR or APR?

Postby tarheelmom » Fri Mar 11, 2016 5:24 pm

I am in a similar situation. I went in for my first ever colonoscopy and came out being diagnosed with rectal cancer. No symptoms other than a little bleeding once in a blue moon when I strained - I thought it was a hemorrhoid. The mass is 23mm x 7 mm and located 3 cm from the anal verge. The doctor discussed the various scenarios with me:

1. Excision - he advised against this since lymph node involvement is not definitively ruled out with the EUS and there would be a 25% change of recurrence at which time spincter saving surgery would be a remote option.

2. LAR with temporary ileostomy followed by 5 years of observation. This is the recommendation. He said that I would have a "new normal" of evacuating my bowels but after 12 months or so I should adjust and have a very good QOL.

3. Neoadjuvant chemo/rad is not indicated for T2N0. The radiation would damage the tissue and make future surgery more difficult. Adjuvant chemo is advised if any of the lymph nodes come back positive.

It's an insane decision to make, but I'm going for the LAR. It's scheduled for 4/12. I just want it out of me. Now that I know it's there, I think I can feel it.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Difficult decision: ULAR or APR?

Postby del » Fri Mar 11, 2016 6:41 pm

Wow, really glad to see all these replies when I woke up this morning. Thank you all!

PainInTheAss, I should have mentioned that my tumour was already excised during the colonscopy. I think that's the less invasive procedure you mention? The pathology on the tumour said that complete resection could not be guaranteed and that lymphovascular invasion was detected. Right now I'm a "probable" stage 1 but my surgeon has said I could very well be restaged 2 or 3 after surgery. The MRI was partially obscured because the polyp wound was sutured with a metal clip, which just showed up as a big black shadow on the scans, so they could not determine if there is invasion of the muscular wall. The MRI report also mentioned some enlarged nodes but said they are probably due to the polyp removal. Wish I'd had an MRI before the polyp was removed. So anyway, I am quite nervous what they are going to find after surgery. Genetic testing came back negative, but I may see a genetic counsellor to do more extensive testing. I have not been offered radiation or chemo at all so far, the surgeon wants to decide after the surgery.

Jan, your situation does sound very similar to mine. I will ask about pre-adjuvant radiation and chemo as that has not been offered to me as an option either. However, after meeting another surgeon for a second opinion, I am really leaning towards the ULAR. Like you, I am sure if the pathology after surgery all comes back negative I may wonder if I made the right choice, but if I do not go in aggressively now and I have a recurrence down the track then I think I will really be beating myself up over it. Lifestyle issues are all secondary to me, I really just want to beat this stupid cancer. Hope further recovery continues to improve your situation!

Jacques, thanks for the links. Looking through those documents, it sounds like the risks are very similar between the two procedures.

Deb, great to hear you have had a good experience with it. I have been reading a lot about colostomy bags and the more I do, the more I think I could comfortably live with one if I had to. Like you said, it's a small piece in the big picture and I think I need to focus on finding the best treatment first and everything else is manageable.

Mastan, thank you for sharing your experiences with the APR. It sounds like most people adjust well and just get on with their lives. I'm in Australia so Sloan Kettering is not an option, but I have a very experienced surgeon from a great hospital and I have a lot of confidence.

tarheelmom, I know exactly what you mean about thinking that you can now feel it! I think my mind is made up for the LAR surgery as well. Best wishes for your surgery! I am having mine a bit earlier than you, so feel free to ask me any questions during recovery.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2019-04 - Became a dad :)
5 years of clean scopes/scans/bloods

prs
Posts: 179
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Difficult decision: ULAR or APR?

Postby prs » Fri Mar 11, 2016 8:51 pm

Where did they get the data for those survival rates? I understand that if "Watch and Wait" is carried out thoroughly then any recurrence can be removed with salvage surgery.

Are they recommending any mop up chemo to go with either W&W or after surgery?
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

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Difficult decision: ULAR or APR?

Postby del » Fri Mar 11, 2016 10:02 pm

We haven't discussed any chemo or radiation after surgery yet, I think that's something we will discuss after surgery once pathology confirms whether lymph nodes are involved.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2019-04 - Became a dad :)
5 years of clean scopes/scans/bloods

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

Re: Difficult decision: ULAR or APR?

Postby ticktock10 » Sat Mar 12, 2016 7:14 am

I was in a similar situation a couple of years ago, although my tumour was "very low" and my surgeon was pretty dismissive of the ULAR option.

I opted for "watch and wait" instead of APR and I'm ok so far. Having said that, it's not for everyone and I think the best choice is the one that you are most comfortable with.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Difficult decision: ULAR or APR?

Postby del » Sat Mar 12, 2016 8:08 pm

Glad that you are doing well. I know exactly what you mean about needing to make a decision your are comfortable with. There are no clear cut decisions and even the experts seem very divided.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2019-04 - Became a dad :)
5 years of clean scopes/scans/bloods

Daisymae
Posts: 129
Joined: Thu Mar 29, 2012 5:23 pm

Re: Difficult decision: ULAR or APR?

Postby Daisymae » Sun Mar 13, 2016 5:32 pm

Hi - I had a 9x6 cm tubulovillous adenoma that was 2 cm in. I had ULAR at MSKCC with an ace surgeon. It have a hand sewn coloanal anastamosis (or as my friends say, a custom recrum :) I had a temp loop ostomy which was reversed 3 months later. It was a rough go for a few months but now 4 years out - life is pretty normal. I go to the bathroom more frequently but it's not a QOL issue - I just pop in and out as needed. So no urgency - just that I go several times a day where it used to be 1 x a day. I eat everything, do triathlons, have even had another baby since then. Quality of life is impt to me and I really hated living with a bag but everyone is different. My mass was high grade dysplasia so not invasive Cancer - considered stage 0. I would make the same decision again but I had a good experience. My doctor did tell me not to google the surgery because I would freak out. Good luck to you

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Difficult decision: ULAR or APR?

Postby del » Tue Mar 15, 2016 4:46 pm

That's really great to hear! From everything I've read it sounds like it's a difficult recovery but usually gets much better with time. Thanks for sharing your story!
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 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
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2019-04 - Became a dad :)
5 years of clean scopes/scans/bloods

CatHair
Posts: 45
Joined: Mon Aug 17, 2015 11:09 pm

Re: Difficult decision: ULAR or APR?

Postby CatHair » Wed Mar 16, 2016 6:52 pm

del and tarheelmom,

Hope my 2 cents can help your perspectives. After much research, stress, and receptivity to what the Universe told me, I chose a ULAR for a low tumor that indeed turned out to be Stage I T2N0M0. My other option was excision, which would have spared the rectum and been less traumatic surgery, but would have required follow-up chemo & radiation. There were lots of decisions to balance QOL -- keeping the rectum but getting the probably permanent damage to tender parts from radiation, and temporary debility from chemo -- against more frequent trips to the john, but greater chances of getting the damn cancer out and gone...and being around to see my boys into manhood. I finally realized that for me, QOL meant a better opportunity to be around longer as wife and mother, daughter and friend, citizen and funny lady. It took a while, but...duh.

So I had the LAR with temporary loop ileostomy, followed 3 months later by ileo reversal. The nurses on the hospital floor told me I made the right decision. They deeply respect my surgeon, and I deeply respect their opinions -- because they've seen it all.

Today I am about 6 1/2 months past the LAR and 3 1/2 months past the ileo reversal, feeling groovy and mostly maintaining some fabulous weight loss after the stress of illness and both surgeries. Yeah,some days are better than others, my poops are peculiar, Metamucil is my new best friend, and I pop in to the toilet pretty darn often...but on busy days an Immodium keeps me in business, and I am aiming to return to marathon training later this spring after a multi-year hiatus.

Hope this helps. I wish both of you all the best.
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T2N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 23 and 19 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good


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