T3N0M0 Rectal Cancer- refuse surgery?

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peanut_8
Posts: 2131
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby peanut_8 » Sat Apr 15, 2017 4:54 pm

prs wrote:See this thread on Watch and Wait:

viewtopic.php?f=1&t=53498


I was going to link this one as well, butt press beat me to it. :idea:
Lots of good info in that one.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Buckeye
Posts: 102
Joined: Mon Jan 18, 2016 7:02 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Buckeye » Sat Apr 15, 2017 8:43 pm

My Rectal cancer was fairly low as well and I only had a temporary illostomy. Was reconnected without much of a problem. I would check with another surgeon. My tumor was 1.3 cm .
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

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CRguy
Posts: 9216
Joined: Sun Feb 10, 2008 6:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby CRguy » Sat Apr 15, 2017 9:36 pm

Sphincter sparing surgeries are well known.

The details however, are where the devil dwells ! :shock:

It may work for you or may not ....
another opinion may well be warranted

my primary was also very low, to the extent my surgeon commented at my first follow up c-scope :
" Wow ... I really did get low on this ... didn't I ? " :shock:

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

mozart13
Posts: 82
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Sun Apr 16, 2017 7:41 am

Things have improved, it will get better from here.
There is no guarantee, surgery or no surgery, with surgery oddss are in favour of being cancer free.
There are so many studies out there, its confusing, one could support any theory.
W&W approach is fairlly new, offered to very small percentage of patients, most studies include only chemo/rad therapy, chemo offered after is not very common, started few years ago, no studdies yet.
There was one study, patients were offered 3 rounds of folfox after initial chemo/rad, results came as 50% CCR, versus 25% if only chemo/rad.
When I was on rad/chemo back in january, met someone who had radiation only, 7 years ago, was CCR, W&W approach, rectal polyp started to come back last year, no mets, so they gave him chemo/rad treatment, dont know what happen after.

Radiation have improved so much compared to years ago, now they can pin-point targetted cells.
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

rickker20
Posts: 115
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby rickker20 » Sun Apr 16, 2017 10:39 pm

Why do people start this threads? Do you want to hear that is fine to avoid surgery from us? My doctor told me "it will kill you" that's all I needed to hear. Going on to 8 years NED.
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

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dschreffler
Posts: 100
Joined: Wed Apr 28, 2010 3:24 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby dschreffler » Mon Apr 17, 2017 6:20 pm

rickker20 wrote:Why do people start this threads? Do you want to hear that is fine to avoid surgery from us? My doctor told me "it will kill you" that's all I needed to hear. Going on to 8 years NED.


Hi!!! Good to see you still going strong. You and I had similar discussion back when I was first diagnosed. I'm 6+ NED, and my first Dr told me that an out patient procedure - TAE may be the way to go based on pre surgery chemo and radiation. I seeked the opinion of 2 others and each had a different perspective - all different degrees of surgery. No surgery was never an option.

The answer is it depends on the person, their cancer characteristics and how it responds to neo adjunctive treatment. Medically driven.

Agree strongly with your point, the decision should not be based on "I want to avoid surgery".. It should be based on probable outcome and quality of life.

Hoping you and I have this same conversation 6-8 years from now!!! Actually for the sake of others, wishing that science is able to eliminate the need for this thread altogether!!!
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX
NED 1/26/11
http://csn.cancer.org/user/120360

skb
Posts: 23
Joined: Tue Mar 28, 2017 2:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby skb » Tue Apr 25, 2017 4:28 pm

Thanks to everyone who provided a ton of information.

Some people like Peter (userid: prs, mozart13) have been lucky to avoid surgery and go on await and watch approach because they have had a complete clinical response. Did you all do something special in addition to the chemoradiation? Like vigorous exercise? Vegetable juicing? Yoga? How can I be in your camp?
Please advise!
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

mozart13
Posts: 82
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Tue Apr 25, 2017 7:51 pm

Nothing unusual, just took beta glucan before chemo/rad, dont think it had much to do with final result.
My activity was normall, walked every day 4-5 km, rain or shine, was off work during therapy, so that was my main job for time being.
Gym,first time over killed it, felt it for 2 days.
Avoided anti oxidants, vitamins, stayed on high protein food.

At the end its luck, stage, some cancers respond completlly, some dont.

Radiation peak is about 16,17 weaks from initiation, in some people it might take 6 months.
There is another tread where I posted some links about radiation, some info about folfox 3 doses in 9 weeks, post chemo/rad, inreases cCR to 50% from 25%.
Also you will find info in those links what is considered cCR.

Radiation plays major role, how they program it, my radiologist told me that they gonna focus on lymph nodes.
After radiation, was told not to touch antioxidants for at least couple of weeks.

There is no guarantee in this bussiness, surgery or no surgery, surgery is still considered king,
some people had pCR, they probablly had cCR as well, maybe re staging wasnt donne, or it wasnt an option,...
With surgery it is important to get clear edges if posiblle, otherwise if cancer cells present at the edges, cancer is still left and distrubed.
Chemo after chemo/rad is important, to kill any small microcells , if any.

Good luck to you!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby prs » Tue Apr 25, 2017 10:56 pm

I quit smoking the week before radiation began, and chewed nicorette gum all thru treatment. :mrgreen:

I too walked for an hour or so most days, but this became more difficult towards the end of treatment when the burn blisters on my butt became too sore. You may want to be prepared for this eventuality by purchasing something like this:

http://www.cvs.com/shop/home-health-car ... uId=641712
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

Kemara
Posts: 1
Joined: Wed Apr 26, 2017 7:40 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby Kemara » Wed Apr 26, 2017 8:06 pm

My husband just came home today from his open Abdominal Perineal Resection with permanent bag (Surgery was 4/21). He is 44, stage III low rectal cancer, (so low the surgeon who did the colonoscopy could not decide if it was rectal or anal by looking at it) with mesenteric lymph involvement. If I remember correctly his tumor was about 7.8cm. He actually refused to discuss the bag option at all (like foot down I will ignore you if you try), even though 2 doctors told him before chemo/radiation that the tumor was too close to the anal exit to save anything. The tumor shrunk significantly (to everyone's surprise) and the operating doctor said he could save some muscle, but he couldn't promise him he wouldn't be living in diapers the rest of his life. So, he went with the bag. I've already learned to care for it and aside from having to clean the opening and change the bag every few days... it's not that bad so far. Our 2 girls age 5 and 2 have already seen it and were like cool Dad... so can we go to the park now?

tldr: To answer your question If the tumor (7.8cm) had completely disappeared... I don't think he would have done the surgery. He actually had a few choice words for the doctor who did the colonoscopy who told him right off there was no avoiding it. The bag - so far it's a minor inconvenience and the kids didn't even give it a second thought

RocketB52
Posts: 18
Joined: Sat Apr 23, 2016 8:21 pm
Facebook Username: Raquel Starace

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby RocketB52 » Wed Apr 26, 2017 9:52 pm

Hello!

Get a second opinion. Two surgeons told me I would need a permanent bag because of location of my own tumor. I had colorectal cancer. I went to Sloan Kettering, where Dr. Garcia Aguilar spoke to me at length--something neither of the other two surgeons did--told me all the pros and cons, and concluded that he could probably leave enough of my colon to do away with the bag after three months or so. He gave me no guarantees, as he could only be sure once he was actually doing the surgery..but as it turned out I ended up with a temporary bag.

Get the best surgeon you can.

That said, I did get used to the vag pretty quickly, and the story in your head is 100 times worse than reality.

Good luck! The important thing is LIFE!

Raquel



sreekanth wrote:Hi,
I am a 41 year old male with a wife and two children.

I was diagnosed with T3N0M0 rectal cancer on 3/23/17. T3 tumor of 4.5 cm, non circumferential in distal rectum, 2.5cm from anal verge. I am starting chemo and radiation next week after which the surgeons I am seeing are recommending a permanent colostomy because of the location of tumor. They say that they can't be sure if the cancer is cured unless they take out the entire affected area (resect the entire rectum) leaving me with a bag.

If the tumor disappears after chemo and radiation, should I necessarily go into surgery? Or should I adopt a wait and watch approach? Are there survivors who just did chemo and radiation and refused surgery? Colostomy seems very drastic and I am worried.

----
Dx 3/23/17
Stage 2 Distal Rectal rumor, T3N0M0
Chemo/Radiation with Xeloda/IMRT starting 4/18
in line for permanent colostomy- trying to avoid
Diagnosis: Synchronous transverse rectal carcinomas, 4/15
Chemotherapy and chemo radiation
Resection and temporary colostomy bag 4/16
Ileostomy reversal 7/16

skb
Posts: 23
Joined: Tue Mar 28, 2017 2:00 pm

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby skb » Thu Apr 27, 2017 3:30 pm

Thank you Peter (userid: prs) and mozart13

How lucky am I to get quick responses from both of you, the rock stars of this forum who have achieved complete clinical response. :)

Looks like I will have to start walking a lot everyday like both of you if I need to even have an outside chance for complete clinical response. :shock:

When you said you avoided antioxidants, you meant you did not drink green tea or eat fruits and berries during the treatment? :?: My wife has put me on a carrot juice regimen and I had no clue if it was interfering with my Xeloda. I asked my oncologist and he said there is nothing to worry about, keep having the juice.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

TheSquire
Posts: 6
Joined: Wed Apr 26, 2017 11:09 am

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby TheSquire » Thu Apr 27, 2017 4:23 pm

I was diagnosed with T2, N0, M0 rectal adenocarcinoma on 3/21/17. After many discussions with surgeons and oncologists, I have decided not to have surgery and go with chemo radiation wait and watch approach. Studies have shown that with early stage rectal cancer, you can have a complete response and avoid the LAR surgery and a permanent colostomy. That's my goal. I am now on Day 3 of Capcitabine and radiation. After about 6 weeks of that, I take a month off and resume a CapOx chemo regimen for three months. Shooting for a full cure by October with rectum intact.
Age 53, male. Diagnosed with rectal cancer in lower rectum on 3/21/17. T2, N0, M0. No surgery. Going with Chemo-radiation approach. Started treatment on 4/25/17.

mozart13
Posts: 82
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Thu Apr 27, 2017 4:53 pm

Radiology dep. gave me printed stuff to avoid antioxidants, so I avoided even green stuff, avoided vit c, whatever boosts imune system counteracts chemo/rad, buy boosting imune system one boosts cancer cells at same time, point of therapy is to kill it.

Good luck!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

mozart13
Posts: 82
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: T3N0M0 Rectal Cancer- refuse surgery?

Postby mozart13 » Thu Apr 27, 2017 5:26 pm

TheSquire wrote:I was diagnosed with T2, N0, M0 rectal adenocarcinoma on 3/21/17. After many discussions with surgeons and oncologists, I have decided not to have surgery and go with chemo radiation wait and watch approach. Studies have shown that with early stage rectal cancer, you can have a complete response and avoid the LAR surgery and a permanent colostomy. That's my goal. I am now on Day 3 of Capcitabine and radiation. After about 6 weeks of that, I take a month off and resume a CapOx chemo regimen for three months. Shooting for a full cure by October with rectum intact.

Thats very good choice, and it is good idea to start therapy earlly, to have better result.
Will you do re-restaging, mri and colonoscopy between or just continue, just wonder?
It helps when you have people around you thinking out of the box.

Good luck!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative


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