anastomotic leak and chemo delay

Please feel free to read, share your thoughts, your stories and connect with others!
mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

anastomotic leak and chemo delay

Postby mct » Mon Jun 19, 2017 5:43 pm

Hi folks

I'm hoping someone can weigh in with their own experience about this or have some advice to offer. I had an ultra low anterior resection for rectal cancer on March 17 2017. After being home for a couple of days, terrible rectal pain started with a significant amount of rectal mucous/bloody discharge. Went to emerg on April 2, 2017. Was admitted after they found an anastomotic leak. Surgery April 3rd for an ileostomy. Rectal pain has been mostly constant since then. Have tried different pain meds. Currently on Lyrica, which is working better than the previous dilauded and tramadol meds.

Leak has persisted since surgery. Chemo has been delayed several times. Most recently, was to start last Friday, June 16. Received call from onco last wed, saying surgeon was still very concerned that chemo would delay leak healing or even make it worse. Chemo was cancelled again and panel was being convened today to discuss my case. I received a call this afternoon from the chemo unit to schedule me for this Friday..folfox. I was surprised because I thought chemo would be cancelled permanently since it's been more than 3 months since surgery, and I was T3N0M0 before surgery and T2N0M0 after. Onco had previously told me that he recommended chemo because I only had a minimal response to chemo/rads pre-surgery. I've since read that leaks can increase chance of recurrence so maybe that has something to do with it. And I also wonder if maybe they figure that since my leak hasn't been healing, that maybe I'm destined for a permanent colostomy, so might as well start chemo...this thought worries me. I've had a hard time dealing with this ileostomy and pray that it can be reversed one day.

I see the onco on Thursday and will ask questions, but in the meantime, if you have any experience with this, or have any advice to offer, I'd appreciate it.

Thank You!!
Mich
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: anastomotic leak and chemo delay

Postby benben » Tue Jun 20, 2017 7:16 pm

Hi Mich,

Sorry to hear about your pain/leak. That's really a drag I'm sure.
While I can't offer much advice, I did have an upper LAR performed and I experience mucus discharge about once a week or so.
At first it was more frequent, but has diminished with time to once ever 1-2 weeks. About once a month I also notice blood in the stool.
I told my surgeon about it, but he was confident that it wasn't a leak as at the time of LAR completion they blew significant amounts of air into the colon not once but twice to test the integrity of the suture. He seemed to think mine is simply scarring and sluffing off of scar tissue as the anastomosis heals. When I do get this mucus discharge it is preceded by some rectal throbbing/pain. For me that pain is pretty mild and what I find most helpful is simply getting up and taking long walks. I also found THC:CBD 1:1 edibles seem to decrease the pain associated with it, while making the throbbing more noticeable.

I'm curious was your mucus discharge continuous or does it come and go?

As for the Ostomy, I'd try and embrace and accept it as much as possible. There are numerous survivors here that don the bag and do so with so much grace.
Maybe you can have a reversal, maybe not, but you can keep one thing in mind. You won't have to deal with those bad LARS days that put you in the bathroom 12-16 times per day.

best wishes.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

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

Re: anastomotic leak and chemo delay

Postby PainInTheAss » Wed Jun 21, 2017 5:38 am

I had an APR and my wound took almost two years to heal. I was told that this can happen in about ten percent of patients, and it's because of the radiation. My chemo was postponed for about 4 months to allow the wound to heal (most of the healing happened in this time and the rest was very, very slow). I don't think their decision has anything to do with your possibility of having a permanent colostomy. An ostomy by itself doesn't affect prognosis. A poor response to chemorad makes more sense and sounds like a good reason for doing chemo.

I don't see why postponing chemo would cause it to be cancelled altogether. That would be like saying, "Well, you might have cancer cells floating around and since we didn't do anything about them a while ago, we'll just leave them." That doesn't make any sense. There isn't some magic window where you "miss" chemo and then don't need it. There are stats the show it is more effective when it's closer to surgery, but that does not mean it becomes completely ineffective later.

I'm not meaning this to be critical of your thinking if it comes off that way, but I have read way too many times others' opinions that everyone should be following the treatment schedule they followed. It simply isn't true. There is a point where you should trust your doctors to know about your case rather than strangers on the Internet, and other times when you should question your doctor because of an opinion that is very different than what most patients are told. It's important to know which is which. People who have not had issues with wounds not healing don't understand the decisions doctors are making. My ex was taken off of his chemo temporarily as a stage IV patient to allow his esophagus to heal because he was starving to death. That decision completely made sense to me, though it might not have to someone who hasn't had issues with wounds not healing on chemo. You have to take advice given from someone who has not had your same experience with a grain of salt.
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

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: anastomotic leak and chemo delay

Postby mct » Wed Jun 21, 2017 6:11 pm

Thank you for your posts BenBen and PainInTheAss

BenBen - my discharge is multiple times daily. The mucousy stuff goes through the anastomis leak and pools in a collection/cavity. When that fills up, it seeps back in through the opening and out my anus. There's a direct correlation between the amount of discharge and pain. Surgeon said the pain would stop when the mucous stops. I'm on Lyrica now which is helping quite a lot and which has allowed me to start walking every day....I feel much better while walking.

PainInTheAss (love the name) - thanks for your post! Hearing that someone else's chemo was so delayed as well as wound healing does make me feel better. Surgeon said that the anastomotic leak could take up to a year to heal. This kind of freaked me out because I haven't found any literature or posts here from anyone that has had a similar experience. I've also read the studies that say that chemo is more effective when it's close to surgery. The reason I thought it might be cancelled altogether is because the surgeon has basically said to me that he questioned the onco's recommendation to do chemo at all.

I know that anastomic leaks don't happen often (I've read anywhere from 3% to 17%) but I thought there might be others here who've had a leak and could share their experience.

mich
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: anastomotic leak and chemo delay

Postby CRguy » Wed Jun 21, 2017 10:32 pm

My sitrep was a bit different. Had a successful LAR ( very low re-attachment with a temp ileo to divert "contents" )
BUTT still had a pelvic abscess 7-10 days post-op.

Did a siggy with contrast and there was no "leak" per se Doctors were "surprised" so I was put on RAMBOcillin ABx and repeated flushes with a drain tube hangin' out ma' BUTT for 10 days = all good all resolved
Chemo delayed about 3 - 4 weeks from when they wanted to start.

Result : I am still here to annoy you all regularly !!!! pushing 10 years later

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 119 guests