STAGE 3 rectal cancer treatment without surgery

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Bob_Weiss
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Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

STAGE 3 rectal cancer treatment without surgery

Postby Bob_Weiss » Tue Sep 04, 2018 8:42 am

I read a summary of an article in a Japanese Oncology journal which indicated that surgery for rectal cancer is rare in Japan because the effect upon future quality of life is severe. They use radiation and chemotherapy only, and get good long-term results.

My quality of life since rectal surgery in 2009 has been compromised because of ongoing bowel problems, particularly diarrhea. Had I known about rectal cancer treatment in Japan, I would possibly have gone there for treatment.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby Phillypatient » Tue Sep 04, 2018 9:32 am

I didn’t know about the study. I would love to read it if you could point the way. I couldn’t agree with you more about the QOL issue post LAR. I told my oncologist I would have easily taken what time I had left presurgery than multiple years in my current state. I’ve realized modern medicine is about “aliveness” and not “wellness.” It has solutions to many problems, however, often times, the solutions can be worse than the problems.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: STAGE 3 rectal cancer treatment without surgery

Postby susie0915 » Tue Sep 04, 2018 12:59 pm

Have you two tried using daily tap water enemas. I started them about a year and a half ago with great success. It takes about 30 minutes in the morning, 5-6 cups of tap water in an enema bag and I don't go again until I do an enema the next morning. It can be awkward at first to become proficient , but has given me the freedom to go out and live a fairly normal life. Many that suffer after rectal cancer and removal of most of their rectum use enemas. Some only have to do every other day, some only use when they need to attend an event and don't want any issues and others do everyday. This was recommended to me by the doctor at the bowel control clinic at the University of Michigan. Lowrectalcancer.com explains the entire process and premise behind enemas for patients that had rectal cancer.

I know some hospitals are following a wait and watch approach after chemo/radiation. If you have a good response you forego surgery at that point and go under surveillance for recurrence. Some will recommend chemo too. I did have a good response and dr told me I may not need chemo after surgery as all that was left was scar tissue. However, after pathology did show minimal residual cancer cells, and even though margins were clear and no lymph nodes affected mop up chemo was recommended. So i dont know, would be nice to maybe not have to have surgery.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 1:10 pm

My tumor shrunk 90 percent after chemo and radiation but it still remained so I don’t kno that there was a real option besides surgery.

I’m definitely feeling the LARS pain though. I will get to trying the enemas.
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; 9/8: 1.8; 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
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

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susie0915
Posts: 861
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: STAGE 3 rectal cancer treatment without surgery

Postby susie0915 » Tue Sep 04, 2018 1:55 pm

NHMike wrote:My tumor shrunk 90 percent after chemo and radiation but it still remained so I don’t kno that there was a real option besides surgery.

I’m definitely feeling the LARS pain though. I will get to trying the enemas.

Enemas are becoming more and more accepted and recommended. Irrigating stomas has been practiced for years, rectal irrigation is really no different. I don't know if you're interested Mike, there is a LARS support group on facebook. Alot of good advice and ideas shared. There are some from here that have joined. It's Living with Lower Anterior Resection syndrome.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 2:22 pm

susie0915 wrote:
NHMike wrote:My tumor shrunk 90 percent after chemo and radiation but it still remained so I don’t kno that there was a real option besides surgery.

I’m definitely feeling the LARS pain though. I will get to trying the enemas.

Enemas are becoming more and more accepted and recommended. Irrigating stomas has been practiced for years, rectal irrigation is really no different. I don't know if you're interested Mike, there is a LARS support group on facebook. Alot of good advice and ideas shared. There are some from here that have joined. It's Living with Lower Anterior Resection syndrome.


I know about it. I want to set up a sandbox around Facebook though. I’d like a virtual appliance but I’ll probably use a Linux virtual machine to keep FB separate from everything else I do.
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; 9/8: 1.8; 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
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

Phillypatient
Posts: 20
Joined: Sun Aug 05, 2018 11:28 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby Phillypatient » Tue Sep 04, 2018 3:51 pm

Lowrectalcancer.com explains the entire process and premise behind enemas for patients that had rectal cancer


Thanks so much for the website Susie. I will certainly do some research. It's ironic that a cure for something that would eventually kill you leaves one wishing one would rather not be alive.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

Swirdfish
Posts: 287
Joined: Sun Jun 19, 2016 3:57 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby Swirdfish » Tue Sep 04, 2018 6:15 pm

I guess its a real dice roll. I had ULAR surgery, and although I have some issues with reoccurring toilet visits and sometimes urgency, its far between. My surgery was awhile ago, and I think my body is still adapting to this day and improving. But this I can live with very easy.

I feel for the people who are experiencing issues. Its not a nice experience when your out, and your clenching and a toilet is quite some distance away. I've had to sacrifice a few pants before.

Also does anyone else think their farts are worse? Becoming a real issue at home and work? I just pretend I don't notice, but this can and will clear out rooms.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Soccermom2boys
Posts: 195
Joined: Tue Nov 10, 2015 10:29 pm

Re: STAGE 3 rectal cancer treatment without surgery

Postby Soccermom2boys » Tue Sep 04, 2018 6:48 pm

I am thinking I would rather still have the surgery because my tumor literally was up against the anal sphincter and it didn’t shrink enough to warrant no surgery and I also therefore needed to have a permanent colostomy. I know, most people would try just about anything to not have an ostomy and I completely understand the reasoning, but while I have to make changes in other ways (dealing with a pouch on my abdomen), it in no way hampers me from being out and about all day and doing all of the activities (running, swimming, biking, riding roller coasters, etc) I did prior to surgery. It is a new normal for sure, I don’t want to say it is sooooo easy, but honestly it is not that bad if you are years later from your surgery and still having troubles with frequency, etc., this is a better alternative for sure. And as for farting—my ostomy pouch has a great filter and so it is rare for any smell to filter through it. I have a colostomy (less maintenance than an ileostomy) which I believe is more typical for rectal cancer patients that have to have a permanent ostomy.

For my body, radiation was honestly not all that helpful in that I didn’t get a great amount of shrinkage of the tumor, but I sure got loads of other lifelong issues from those zaps. :mrgreen: If only there was some magic ball out there that could tell you in advance how your body would react to each component of rectal cancer, then you could pick what worked best: I’ll take the surgery with a side of chemo, but hold on the radiation, please.
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 7:54 pm

susie0915 wrote:
NHMike wrote:My tumor shrunk 90 percent after chemo and radiation but it still remained so I don’t kno that there was a real option besides surgery.

I’m definitely feeling the LARS pain though. I will get to trying the enemas.

Enemas are becoming more and more accepted and recommended. Irrigating stomas has been practiced for years, rectal irrigation is really no different. I don't know if you're interested Mike, there is a LARS support group on facebook. Alot of good advice and ideas shared. There are some from here that have joined. It's Living with Lower Anterior Resection syndrome.


I set up a secure browser in a Windows Virtual Machine to sign up for Facebook and I filled out the join form. So we'll see whether or not they let me in. I somewhat wonder if I'm not far enough in for this group (that is too soon after reversal). We'll find out. So my approach to using FB will be to run the virtual machine, start up the Brave browser which will only be used for FB. That way there should be no tracking issues. I generally don't use the Virtual Machine for anything else and I've walled things off at the Browser and system level.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 8:02 pm

Phillypatient wrote:Thanks so much for the website Susie. I will certainly do some research. It's ironic that a cure for something that would eventually kill you leaves one wishing one would rather not be alive.


I've had a lot of those kinds of thoughts lately.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 8:04 pm

Soccermom2boys wrote:I am thinking I would rather still have the surgery because my tumor literally was up against the anal sphincter and it didn’t shrink enough to warrant no surgery and I also therefore needed to have a permanent colostomy. I know, most people would try just about anything to not have an ostomy and I completely understand the reasoning, but while I have to make changes in other ways (dealing with a pouch on my abdomen), it in no way hampers me from being out and about all day and doing all of the activities (running, swimming, biking, riding roller coasters, etc) I did prior to surgery. It is a new normal for sure, I don’t want to say it is sooooo easy, but honestly it is not that bad if you are years later from your surgery and still having troubles with frequency, etc., this is a better alternative for sure. And as for farting—my ostomy pouch has a great filter and so it is rare for any smell to filter through it. I have a colostomy (less maintenance than an ileostomy) which I believe is more typical for rectal cancer patients that have to have a permanent ostomy.

For my body, radiation was honestly not all that helpful in that I didn’t get a great amount of shrinkage of the tumor, but I sure got loads of other lifelong issues from those zaps. :mrgreen: If only there was some magic ball out there that could tell you in advance how your body would react to each component of rectal cancer, then you could pick what worked best: I’ll take the surgery with a side of chemo, but hold on the radiation, please.


This is why we're having book discussions on this stuff in my thread. So folks could read through ahead of time just to see what the journey may be like. I did not really understand how tough things would be at every stage.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Tue Sep 04, 2018 8:05 pm

Swirdfish wrote:I guess its a real dice roll. I had ULAR surgery, and although I have some issues with reoccurring toilet visits and sometimes urgency, its far between. My surgery was awhile ago, and I think my body is still adapting to this day and improving. But this I can live with very easy.

I feel for the people who are experiencing issues. Its not a nice experience when your out, and your clenching and a toilet is quite some distance away. I've had to sacrifice a few pants before.

Also does anyone else think their farts are worse? Becoming a real issue at home and work? I just pretend I don't notice, but this can and will clear out rooms.


I've noticed more gas while avoiding foods that produce gas. I suspect that it's something to do with gut bacteria or maybe the lack of. Some of the folks here take probiotics.
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; 9/8: 1.8; 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
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

Capercrohnieileo
Posts: 22
Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: STAGE 3 rectal cancer treatment without surgery

Postby Capercrohnieileo » Tue Sep 04, 2018 8:52 pm

Soccermom2boys wrote:I am thinking I would rather still have the surgery because my tumor literally was up against the anal sphincter and it didn’t shrink enough to warrant no surgery and I also therefore needed to have a permanent colostomy. I know, most people would try just about anything to not have an ostomy and I completely understand the reasoning, but while I have to make changes in other ways (dealing with a pouch on my abdomen), it in no way hampers me from being out and about all day and doing all of the activities (running, swimming, biking, riding roller coasters, etc) I did prior to surgery. It is a new normal for sure, I don’t want to say it is sooooo easy, but honestly it is not that bad if you are years later from your surgery and still having troubles with frequency, etc., this is a better alternative for sure. And as for farting—my ostomy pouch has a great filter and so it is rare for any smell to filter through it. I have a colostomy (less maintenance than an ileostomy) which I believe is more typical for rectal cancer patients that have to have a permanent ostomy.

For my body, radiation was honestly not all that helpful in that I didn’t get a great amount of shrinkage of the tumor, but I sure got loads of other lifelong issues from those zaps. :mrgreen: If only there was some magic ball out there that could tell you in advance how your body would react to each component of rectal cancer, then you could pick what worked best: I’ll take the surgery with a side of chemo, but hold on the radiation, please.


I don't have cancer so can't add to the chemo vs surgery part but I do have a permanent ileostomy and have to say my quality of life is so much better than pre ostomy and other than a few minor things there is nothing I can't do because of my ostomy. It took a little while to get used to and it has some issues but it's so much better than living in the bathroom or dying.
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery Oct 17, 2018.
Didn't go so well. Small bowel obstruction found Oct 26, 2018, day 46 of this hospitalization.

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby boxhill » Wed Sep 05, 2018 11:25 am

I wonder how much of the problem is caused by radiation, rather than the surgery? I know my husband has had ongoing urinary tract problems clearly caused by the radiation to the prostate bed a couple of years after surgery, rather than the surgery itself. (Not that I would advocate his forgoing it.)

I don't have rectal cancer, but from reading what others report I wonder whether some people with low tumors would be better off with a colostomy rather than radiation to try to avoid one.

Not a choice I've had to make. It would be very, very tough.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule


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