New to forum, rectal cancer, must make surgery choice -- help!

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justAfterTEM
Posts: 25
Joined: Tue Dec 31, 2013 11:49 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby justAfterTEM » Tue Aug 25, 2015 9:29 pm

CatHair wrote:Everyone (almost), thanks for your contributions. It has been an exhausting, exhilarating week of research and comparisons, thoughts and feelings, rational reasoning and receptivity to signs. (My surgeon's resident says I've done more research than most medical students.) I have decided to go with the LAR, which, says the surgeon (whom we like more and more) to the greatest degree doctors will admit, should take care of the cancer & threat and I will not require chemo/radiation -- which is a big factor in its favor.

If I were childless or single, I would likely go with the more elegant TEM/TAMIS and chemo/rad and take my good chances on no further trouble. But I do have teenagers, a husband, and other family who would be bereft without me. My quality of life does include my life with my loved ones. I am willing to trade a piece of my ass for peace of mind, and this forum will be a good resource for post-surgery management tips going forward. So the wheels are in motion, I'm scheduled for 8/31, and the surgery coordinator doesn't disagree that if black coffee and Dr Pepper can be considered clear liquids so can Guinness Stout, so I can at least have some B vitamins to fortify me during the two-day prep 8) Wish me luck and health. Thanks.


you are wise. If the LAR is over-aggressive, you stand to lose possibly a lifetime of comfort. But if the TEM is not aggressive enough, you stand a bigger chance to lose literally everything. wise choice, wish we made the same.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby cathy123 » Wed Aug 26, 2015 5:04 am

Sounds like you have made a decision you are at peace with and have a great attitude. I felt the same way that as a mom I just had to do what was needed to be there for my family. Best of luck with the surgery.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby KWT » Wed Aug 26, 2015 9:52 am

Trajan89 wrote:Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.
Find a third option.

Ridiculous! I have zero rectum and use the bathroom once, yes once every other day.

momomx3
Posts: 16
Joined: Thu Sep 15, 2011 9:25 am
Facebook Username: cindyremmert

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby momomx3 » Wed Aug 26, 2015 11:46 am

I was diagnosed in 7/10 with "early stages" rectal cancer. Due to my young age of 43, I was reluctant to have the major surgery which would most likely result in a permanent colostomy due to the location of the tumor. I opted for the TEM which I had in 8/10. Unfortunately, the path report showed the tumor was actually T3 so further action was necessary. I ended up having APR surgery in 11/10, in which lymph nodes were found to be cancerous, followed by chemo and radiation due to final diagnosis of IIIC rectal cancer. The surgery was performed laparoscopically and my recover was great - hospital for only 4 days after the 12 hour surgery! 5 years out from diagnosis, I am happy, healthy and have BM's differently than most of the population. :lol: Was a permanent colostomy my preference? Oh, heck no! BUTT, I have had a full, active life and refuse to be defined by it. Like you, I have children and would like to be present in my future grandchildren's lives so the permanent colostomy is a small price to pay.
It is a difficult decision and one that only you are capable of making for yourself. Find peace in your decision and live! Everyone has a different experience and only you know what is right for you and your situation.

Best wishes for a successful surgery and recovery!
Cindy
Cindy, mom of 3, 49 yo
Dx 7/9/10 RC, stage ??, at age 43
Transanal excision - 8/16/10
APR surgery - 11/10/10, Stage IIIc RC, perm colostomy
4 rounds FOLFOX - 12/3/10
28 rounds Radiation - 2/11
4 rounds FOLFOX - 3/11
CT Scan - 7/12 - NED!!!

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby kellywin » Wed Aug 26, 2015 6:01 pm

kennytwisted wrote:
Trajan89 wrote:Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.
Find a third option.

Ridiculous!


Agreed^^. I'm pretty regular, once a day (sometimes I'm not patient and what could be one trip turns into 3 or 4 cause I don't want to wait, but it never affects me at work). Do I have some days that aren't great, yes, butt it doesn't keep me from doing anything. I work 40+ hours a week in an Executive capacity position at a bank, I have a 10 year old daughter, I'm an avid shopper, and we snow ski at least once a month. There's nothing from the surgery that prevents me from doing anything.

The radiation on the other hand, while not a giant problem at the time, has left some lingering effects that do affect my life like menopause related issues, and ass muscles that are like leather. My physical therapist compared me to only one other patient she's seen, someone with arsenic poisoning. And I think some of my ass problems are imflamed because of what radiation did to my hemorrhoids.

I'm not advocating that the TEM procedure isn't a viable option, I can't speak to it because it wasn't an option for me. But don't believe that by having the surgery your life after will be some miserable event.

Glad you got your procedure scheduled. Now you have a plan and it's easier once you have an idea where you're going. Good luck.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

CatHair
Posts: 46
Joined: Mon Aug 17, 2015 11:09 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby CatHair » Wed Aug 26, 2015 7:46 pm

My mantra now is the 1970 classic from Funkadelic, "Free Your Mind and Your Ass Will Follow." https://www.youtube.com/watch?v=xiqmEibSY0I
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T1N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 25 and 21 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good

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

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby ozziej » Thu Aug 27, 2015 1:50 am

So the wheels are in motion, I'm scheduled for 8/31, and the surgery coordinator doesn't disagree that if black coffee and Dr Pepper can be considered clear liquids so can Guinness Stout, so I can at least have some B vitamins to fortify me during the two-day prep 8) Wish me luck and health. Thanks.


Good to hear you have made your decision and the wheels are turning. Beer and bowel prep? hmmm........that would be an explosive combination for me. Actually, I've just discovered my own alternative bowel prep. After 13 weeks of being 'good' and 'careful' with food after reversal I decided to have a blowout :roll: . So I had some (well, maybe a lot) of potato chips followed by two pieces of my favourite Toblerone chocolate. Half an hour later it was action stations, but hey I'm having a lay day so not concerned about having to stay close to the loo. So that will be my new bowel prep for my first post-op colonoscopy. None of this golytely rubbish (blaaah), I might just add some Guinness to go with the chips :D
Wishing you all the best for Monday. Make sure you have a stoma nurse work with you pre-op to find the best site for your temp ileo and post-op to handle any issues. As you were a marathon walker you should have no problems with the other tip, which is walk,walk, walk as much as you can to get things going and promote healing. Keep us posted.
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!! : )

Trajan89
Posts: 15
Joined: Sun Mar 29, 2015 6:58 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby Trajan89 » Thu Aug 27, 2015 2:35 am

kennytwisted wrote:
Trajan89 wrote:Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.
Find a third option.

Ridiculous! I have zero rectum and use the bathroom once, yes once every other day.


Kenny how are you achieving that? Are you on a special diet, doing daily enemas, or what?

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby KWT » Thu Aug 27, 2015 8:32 am

Trajan89 wrote:
kennytwisted wrote:
Trajan89 wrote:Bowel surgery is not something to be played around with. Once they perform surgery on you, I guarantee that you will not want to live very long because of the deleterious effects of that kind of surgery on your quality of life.
Find a third option.

Ridiculous! I have zero rectum and use the bathroom once, yes once every other day.


Kenny how are you achieving that? Are you on a special diet, doing daily enemas, or what?


Sorry I didn't clarify, Yes enema every other day no problems in that dept. I never have to think about the bathroom when I'm out and about and can eat anything. The first couple times it was a bit strange but once figured out its easy peazy and you're free. Tammy Layne has much info on here about it, try it for a few days if you're not completely satisfied your money back. Ha. Just try it you'll be glad you did.

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby justin case » Fri Aug 28, 2015 7:25 pm

CatHair wrote:Ongoing thanks, everyone. You're a great help to me in this struggle. Except Trajan: go take a long walk off a short pier until you can contribute a positive attitude. :twisted:

First off, this is a good attitude. I had a T3 and did the chemo, chemo/rad, surgery, and more chemo. I had colon cancer, and rectal cancer, and some days, my stay in the restroom appears just as sound as that of the Great Dane, that leave a pile on my lawn. I had a very low rectal tumor, and things work fine, only more often. I recently drove 600 miles with 2 bathroom stops, and 3 stops to drink a beer, oh and eat :shock:
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

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby PainInTheAss » Sat Aug 29, 2015 2:02 am

Yep, when the rubber met the road, I told them to take as much out as needed to give me the best chance for a cure which included my uterus and ovaries even though there was no cancer detected there. I was high risk of spread because my tumor broke through the vaginal wall. I just couldn't take any risks because of my kids. I wouldn't need all that if I were dead, so I have learned to live without it.

I am a little jealous of Jayne, though. She rolled the dice and won. She is a baller. Oh, well <changing bag>.
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

CatHair
Posts: 46
Joined: Mon Aug 17, 2015 11:09 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby CatHair » Sat Sep 05, 2015 1:26 pm

Hey, everyone. I got back home yesterday (Friday) after Monday afternoon's surgery. Cut to the chase: Path report (in before the holiday weekend) was T1N0. Got NoMo rectum but I am apparently in the clear, with no need for chemo and/or radiation. The surgeon, who was marvelous, said that while I *could* have had the excision etc., I "will sleep better at night for the next five years" knowing the lymph were not affected. At the last minute he even chose to use (if extend) my existing C-section scar to do the work, so I won't have the visual reminder of a vertical front-and-center scar on my pretty belly in the mirror every day. "No extra charge," he said. We really like him. The temporary ileostomy isn't a big deal and now I know so much more about my bile! Plus I've lost so much (affordable) weight from stress and surgery that all my clothes will drape over the bag nicely :roll: Will go back in a few months to restore the intestinal path, then on to managing the movements and going in for regular scans. Thanks again for your advice, support and help.
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T1N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 25 and 21 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby cathy123 » Sat Sep 05, 2015 4:52 pm

Glad surgery and biopsy results went well! Sounds like you are definitely on a good path.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

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

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby ozziej » Sun Sep 06, 2015 2:10 am

Great news. :) Best wishes for a speedy recovery.
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!! : )

CatHair
Posts: 46
Joined: Mon Aug 17, 2015 11:09 pm

Re: New to forum, rectal cancer, must make surgery choice -- help!

Postby CatHair » Sun Nov 29, 2015 10:22 am

Update: Going in tomorrow midday for ileostomy reversal, after three basically uneventful months with the illy bag. Trying to be positive in attitude about what may come next regarding bowel management, though I would be lying if I said I was not apprehensive. Thanks to Colon Club folks who have been through this before and whose posts are helping me know what I might expect. Now, back to Day Two of clear liquid diet (well, the chicken broth in which I simmered some porcini mushrooms for added nutrition and umami oomph isn't totally clear), two bottles of magnesium citrate later this afternoon and evening, and in between, housework, paperwork, dog walking, and taking the elder son to his friend's house so they can drive back to college today. Wish me a relatively easy recovery and minimal poop issues. I don't do well with disturbed kishkas (nausea, cramps).
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T1N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 25 and 21 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good


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