STAGE 3 rectal cancer treatment without surgery

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NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Wed Sep 05, 2018 11:37 am

boxhill wrote: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.


The radiation worked on me as it should have. It shrunk the tumor 90% and didn't affect anything else that I'm aware of but mine was 5 cm from AV. At much lower numbers, the sphincter muscles would likely see some damage. I think that the surgeon doesn't really offer a choice. My surgeon told me that she would make the decision during the surgery. After seeing the radiation results, though, she said that the odds of a colostomy were 5%. I think that she both needs to see that the sphincter muscles are intact enough for a good result and that there are no other issues discovered during the surgery.

As you said, the choices are tough because there are downsides to all of the options.
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

Gravelyguy
Posts: 59
Joined: Thu Jul 05, 2018 6:03 pm

Re: STAGE 3 rectal cancer treatment without surgery

Postby Gravelyguy » Wed Sep 05, 2018 8:27 pm

I am so sorry some of you are having trouble post takedown. I wonder if radiation has something to do with it too. I had short course, 5 days, radiation with a proton beam machine so it is supposed to be much better at only radiating what it is supposed to radiate. I am at about 2 1/2 months and things are pretty close to normal. I am back teaching full time. Heck, I went to the MN state fair with 200,000 other people last Saturday with no issues.

I also wonder how much the surgeon plays a roll in post lar issues? My tumor pre chemo and radiation was less than a cm from the anal verge. My colorectal surgeon at Mayo specializes in ultra low lars. He told me give it 3 months and like I said I am almost there and feeling pretty good.

Again sorry to all you who aren’t having such a great experience. I feel a little guilty even posting but for those reading this in the future, I just want them to know that it doesn’t always turn out tough.

I do know that sitting for long periods of time sets me off. So I try to keep moving or lay down.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Gravelyguy
Posts: 59
Joined: Thu Jul 05, 2018 6:03 pm

Re: STAGE 3 rectal cancer treatment without surgery

Postby Gravelyguy » Wed Sep 05, 2018 8:36 pm

As to the gas issue, I deal with that off and on. For me, I think it has to do with eating processed food particularly carb rich foods. I am sure we all react differently to different foods but for me it really seems like the more bad carbs I take in the more gassy I become.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Bob_Weiss
Posts: 735
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: STAGE 3 rectal cancer treatment without surgery

Postby Bob_Weiss » Thu Sep 06, 2018 10:12 am

Someone on the MEDIVISOR health website informed me that Memorial Hospital in NYC now does Stage 3 rectal cancer treatment WITHOUT doing surgery in some cases. For someone investigating current treatment options for their Stage 3 cancer, this seems worth investigating further. Unfortunately, I do not think this was an option when I was in 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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Thu Sep 06, 2018 10:26 am

Gravelyguy wrote:As to the gas issue, I deal with that off and on. For me, I think it has to do with eating processed food particularly carb rich foods. I am sure we all react differently to different foods but for me it really seems like the more bad carbs I take in the more gassy I become.


I dropped cream in coffee and milk and that has helped. I think that dairy contributes to gas.

Also, the fiber supplements recommended widely generate gas too.
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

Bob_Weiss
Posts: 735
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: STAGE 3 rectal cancer treatment without surgery

Postby Bob_Weiss » Thu Sep 06, 2018 3:27 pm

Phillypatient wrote: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.


I believe that the Japan study was on the MEDIVISOR website. This site sometimes has interesting information not found elsewhere.
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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Thu Sep 06, 2018 3:36 pm

Bob_Weiss wrote:Someone on the MEDIVISOR health website informed me that Memorial Hospital in NYC now does Stage 3 rectal cancer treatment WITHOUT doing surgery in some cases. For someone investigating current treatment options for their Stage 3 cancer, this seems worth investigating further. Unfortunately, I do not think this was an option when I was in treatment.


There have been clinical trials recently for Total Neoadjuvant Therapy which does Chemo, then Chemo/Radiation and then surgery if needed. In my case, though, I’m sure that I still would have needed surgery with TNT. The order of the first two steps could be exchanged too.
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

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: STAGE 3 rectal cancer treatment without surgery

Postby hawkowl » Sat Sep 08, 2018 4:56 am

I was offered watch and wait because I had a complete response to neoadjuvant FOLFOX followed by chemoradiation...but I chickened out because I wanted to minimize any chance of recurrence. I also opted out of sphincter sparing surgery because my tumor was so distal.
I enjoy an excellent quality of life as a permanent ostomate and have no regrets (even though my pathology showed a complete pathological response). Not sure what I would do if I knew in advance that I had a complete pathological response...
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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susie0915
Posts: 864
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 » Sat Sep 08, 2018 8:02 am

I know after my chemo/radiation the surgeon did a sigmoidoscopy and said all that was left was scar tissue. While he never offered watch and wait he did say I may not need chemo after surgery. This made me happy. The pathology after surgery showed minimal residual cancer cells, so oncologist did recommend chemo. Big disappointment. My question is as my surgeon only saw scar tissue, do they biopsy the area to be sure there is no cancer remaining? In my case even though I had a good response to chemo/radiation the cancer was still present. If I would've been offered watch and wait I probably would've done it.
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

prs
Posts: 118
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: STAGE 3 rectal cancer treatment without surgery

Postby prs » Sat Sep 08, 2018 6:11 pm

I've been on Watch and Wait for three years, see this thread: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53498

My surgeon strongly advised me to start a six month course of chemo as soon as she determined I'd had a complete clinical response. She also told me she strongly advised her patients who had surgery to take the chemo. She said the data shows chemo significantly reduces the risk of recurrence in all patients.
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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: STAGE 3 rectal cancer treatment without surgery

Postby NHMike » Sat Sep 08, 2018 6:16 pm

prs wrote:I've been on Watch and Wait for three years, see this thread: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53498

My surgeon strongly advised me to start a six month course of chemo as soon as she determined I'd had a complete clinical response. She also told me she strongly advised her patients who had surgery to take the chemo. She said the data shows chemo significantly reduces the risk of recurrence in all patients.


She is probably right that it reduces the risk but it carries its own costs in terms of the period of chemo along with permanent side-effects.

This is why we have specialists. My Oncologist expressed opinions on Surgery that the surgeon disagreed with. And my surgeon expressed opinion that my oncologist disagreed with. In the end, the surgeon makes the surgical decisions and the oncologist makes the oncology decisions.
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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