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

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

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

Postby CatHair » Fri Aug 21, 2015 2:21 pm

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:
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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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 » Fri Aug 21, 2015 6:35 pm

Cat - I don't know if I have any extra to add that hasn't been already offered. Butt, I'll chime in anyway. Welcome.

In my opinion, the most important thing for you is to find a good surgeon, you only get 1 shot at this. It doesn't necessarily have to be at a major cancer center or hospital. Somehow, I was lucky enough in my town to have a fantastic one who practices with his son - this is what they do and they do it together best of both worlds, someone with years upon years of experience and someone younger who's learned the new techniques.

The typical treatment (of course depending on your surgery choice & staging) is chemoradiation, surgery, chemo. The surgery does take quite some time to adjust from a bathroom perspective, I had mine in March of 2013, but I'm doing pretty well - sometimes I spend some time in the bathroom, but it doesn't control my life, I don't think about it all the time, it's pretty much a non-issue most of the time. Chemo has left it's mark as well as radiation. Radiation is the gift that keeps on giving and probably the one that's left the biggest mark on my life (post menopause and hip/glut pain). However, all that said, I'd do it all again in a heartbeat because I'm here. Yes, there are things to complain about with permanent side effects, but I'm here.

Obviously, you have a big choice to make and it has to be the right one for you. Just be comfortable in your decision. And no matter what, there's probably someone here who can give you their thoughts on just about anything related to this joyride of fun.

Take care,

Kelly
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 » Fri Aug 21, 2015 7:57 pm

Kelly, thank you. Today the surgeon (I do like him) and I had a 40-minute phone conversation. With a stage 1, T2 polyp that's nice and clean, suitable for TEM excision, with no worrisome characteristics, and no indirect evidence of lymph node involvement per MRI, he thinks that I'd have an equally good outcome with either choice. If it were him, he would choose the TEM with adjuvant chemoradiation, and take his chances on a recurrence in the pelvis. But if meeting my future grandchildren is my top priority (again, our kids are only 19 and 15), the LAR might be my preferred choice. He said there's no rush, we're not tied to the 8/31 surgery reservation, and I should take the time I need to come to a point where I am comfortable with my decision. Meanwhile, both the surgeon and, separately, my family doctor mentioned possible longterm damaging effects of radiation on neighboring real estate of vagina and bladder/urethra -- an alarming prospect. Ladies, what say you?
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

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

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

Postby Daisymae » Fri Aug 21, 2015 8:26 pm

I had a 9x6 cm mass which ended up being stage 0 so no chemo/rad. I had surgery at Sloan Kettering and had rectum removed with coloanal anastamosis/temp Ostomy which was reversed 3 months later. My mass was about 2 cm from anal verge. I had some complications in the hospital - was there for 13 days. Living w the ostomy was tough for me. I had a 1 year old at the time and was very active and just didn't acclimate well to it. Plus I had horrible skin reactions to the appliances. That said, the first 3 months were HELL after reversal. Pooped my pants, was afraid to go out, awful butt burn etc. However I will say - like everyone on here told me it would - it got better w each passing week. 3 months post reversal I did my first olympic distance triathlon. I felt great! Yes I have a new normal. That means I go frequently but it's not an issue. It's not urgent, I just go more but smaller amounts. So I could hold it if I had to but usually just pop in and out of bathrooms as needed and move on with life. I am 3.5 years out and glad I did LAR. It seemed radical at the time but I was 34 and wanted to not spend the rest of my life worrying "what if"... Everyone is different and some people have horrible post LAR experiences. I think it's best to go to a major center w very experienced colorectal surgeries. Get multiple opinions. I got 3 and ultimately picked the most radical option but in hindsight thankful I did. Good luck :)

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

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

Postby Daisymae » Fri Aug 21, 2015 8:39 pm

Sorry I did want to add - my quality of life now is great. Truly. I have even had another baby since my surgery and had no problems. As I mentioned I do have a new normal but it in no way has impacted my life negatively. The only thing I did want to add is that I do have an issue w scar tissue. This has come up in the last 12 months. Apparently my rectum has adhered to one of my female organs which causes a very predictable but painful 12-24 hours of pain every time I ovulate. It's like clockwork. Thankfully once we figured out what was going on, I just take a rx NSAID and it totally knocks it out. So 12 days a year I rely on a pain pill. I don't think that's so bad but did want to disclose! Again, good luck!

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

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

Postby justAfterTEM » Fri Aug 21, 2015 9:15 pm

I heavily recommend the radical option. We chose TEM, and is now paying the ultimate price. The price of life-long discomfort is nothing in comparison.

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

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

Postby weisssoccermom » Fri Aug 21, 2015 9:35 pm

It's not fair to say that because you chose TEM and had a recurrence that it is necessarily a bad option. I also chose that option in 2007 and have been cancer free ever since. The only person who can make the choice is the patient him/herself. What was right/wrong for any one patient isn't necessarily right/wrong for another.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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

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

Postby Trajan89 » Mon Aug 24, 2015 8:55 pm

teachpdx 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.


I don't often get angry when I see a post, but Trajan89 your post made me VERY angry :evil: You are entitled to your opinion, but you do not have a signature so we don't know what your frame of reference is. I had a LAR and have NO rectum and have managed to get on with my life. So how long have YOU been living with your low QOL? Sorry about that.


I had my rectum resectioned because of a recto-rectal intussusception. My surgeon at Johns Hopkins told me that there would be no side-effects after the surgery and once I came home, I quickly realized that he was a charming sociopath with good people skills, who had lied to me.

I've been living with LARS for the past 6 years of my life and it absolutely sucks. I hate having to constantly go to the bathroom once every 3 hours and when I'm not there, I experience symptoms like increased gas and urgency. It sucks that I can no longer hangout with my friends and family and eat socially again like I was once able to. Quite honestly, I can't understand how you're willing to accept such a low quality of life.

I'm writing this to let Cat know about the possible side-effects of this type of surgery so that she can make an informed decision.
Last edited by Trajan89 on Tue Aug 25, 2015 1:21 am, edited 1 time in total.

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

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

Postby jhocno197 » Mon Aug 24, 2015 9:26 pm

Hopefully someone else who is wiser than I will chime in as well, but whichever route you take, start taking cimetidine before surgery & continue after...in some cases, helps prevent metastasis.
I wish you well.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

rickker20
Posts: 119
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

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

Postby rickker20 » Mon Aug 24, 2015 10:49 pm

weisssoccermom wrote:It's not fair to say that because you chose TEM and had a recurrence that it is necessarily a bad option. I also chose that option in 2007 and have been cancer free ever since. The only person who can make the choice is the patient him/herself. What was right/wrong for any one patient isn't necessarily right/wrong for another.


Why do we have to thru this every time. If you don't want surgery or if you want some other kind surgery that's your choice. Just don't blame other for your decision if cancer comes back in your pelvis area and they have to take out everything or it goes to your liver or lungs.

Your doctors are trying everything so you don't have battle cancer again. TEM does not work for everyone you were one of the lucky ones.

Make your choice a live with it.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

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

Postby weisssoccermom » Mon Aug 24, 2015 10:59 pm

Rikker...what IS your problem?? If the poster wants to have an LAR by all means she should. If she doesn't then she shouldn't. Just because your surgeon didn't want to do an excision doesn't mean it is necessarily a bad option. In addition, you were diagnosed 6 years ago and new studies have been conducted with impressive results. Not all surgeons believe that a TEM is necessarily a bad option for a specific subset of patients. If this poster has been given that option, she has every right to explore it. Her surgeon wouldn't have offered it if he didn't feel it was a very viable choice.

I merely stated that the other poster shouldn't automatically assume that because the TEM didn't work for her that it was a bad option for EVERYONE....because it isn't. It is no different than saying that because you had a failed LAR that it is necessarily a bad option for everyone....it isn't. Everyone is different. Let the poster make a decision for herself.

You make it sound as tough if a patient has an LAR the cancer won't come back....either locally or at a distant site. SORRY, but that statement just isn't true. The one thing you can be 100% certain about cancer is that NOTHING is written in stone. There are no rules to cancer and certainly no rhyme or reason as to why some people have a recurrence while others don't.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

rickker20
Posts: 119
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

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

Postby rickker20 » Mon Aug 24, 2015 11:04 pm

Trajan89 wrote:
teachpdx 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.


I don't often get angry when I see a post, but Trajan89 your post made me VERY angry :evil: You are entitled to your opinion, but you do not have a signature so we don't know what your frame of reference is. I had a LAR and have NO rectum and have managed to get on with my life. So how long have YOU been living with your low QOL? Sorry about that.


I had my rectum resectioned because of a recto-rectal intussusception. My surgeon at Johns Hopkins told me that there would be no side-effects after the surgery and once I came home, I quickly realized that he was a charming sociopath with good people skills, who had lied to me.

I've been living with LARS for the past 6 years of my life and it absolutely sucks. I hate having to constantly go to the bathroom once every 3 hours and when I'm not there, I experience symptoms like increased gas and urgency. It sucks that I can no longer hangout with my friends and family and eat socially again like I was once able to. Quite honestly, I can't understand how you're willing to accept such a low quality of life.

I'm writing this to let Cat no about the possible side-effects of this type of surgery so that she can make an informed decision.


So you rather be 6 feet under? Be grateful that you are alive because some other did not have that choice and are no longer with us. You can get a colostomy and have a good life if you feel your life is not good. Many have gone this road and and living a good life.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

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

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

Postby CatHair » Tue Aug 25, 2015 7:01 pm

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.
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

me2
Posts: 32
Joined: Wed Jul 09, 2014 2:06 am

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

Postby me2 » Tue Aug 25, 2015 9:18 pm

CatHair wrote:What to do? Screening colonoscopy found rectal cancer four weeks ago. CT scan & MRI imaging and labs are encouraging -- max T2 (says the radiologist), extremely low CEA, no apparent lymph involvement -- but the polyp is 4.4 x 2.2 x 1.5cm and located very close to the anus. The surgeon, who is around 60 years old, excellent and whom we like, was first talking about "standard" for this situation: taking my dear rectum (only way to get to the lymph nodes to check them) and doing colo-anal resection with temporary (3-month) ileostomy -- awful surgery that would leave me with sensation and control but basically at the whim of my bowels for the rest of my life -- but would eliminate any chance of spread. Then he looked again at the MRI and offered trans-anal excision -- much less invasive, outpatient surgery, one week recovery, though would have to be followed by chemo/radiation. It is not "standard" but his senior partner (surgeon is #2 in seniority in large practice in Texas Medical Center) concurred that it would be "appropriate to offer" and "not unreasonable" for me. He says if it were he, he'd go for the lesser procedure. We will talk again two days from now. Surgery date is 12 days from now, and I must make a decision a few days beforehand so they can set up the operating room.


Excision is considered appropriate for T1 rectal cancer. Chemo/radiation recommendations depend on how far it got into the sub-mucosal layer which they divide into thirds (Sm1/Sm2/Sm3).

If it comes back T2 you can treat the first surgery as a big biopsy or accept increased local recurrence risk which should be detected early due to the follow-up protocols - alternating sigmoidoscopy and trans-anal ultrasound every 3 months for a few years, then every six months getting to five years.

Obviously it's a personal choice and you need to do what you think is best for you.

Good luck!
Last edited by me2 on Tue Aug 25, 2015 9:27 pm, edited 1 time in total.
July 2014 stage 1 RC t1n0m0 age 41
August 2014 TEMS
September 2015 scope one diminutive hyperplastic polyp

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

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

Postby pfCml73183 » Tue Aug 25, 2015 9:24 pm

CatHair, I love the way you think. Guinness is a clear liquid then : )
Best wishes,
Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15


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