Stage 3 no surgery?

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Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Stage 3 no surgery?

Postby Nica432 » Sat Jan 16, 2016 1:19 pm

Hi. I'm new to the forum. I was diagnosed with stage 3a rectal cancer at the end of November. I am a little more than half way through chemo and radiation. The typical next step will be surgery. However, I am wondering if there is anyone out there who has elected not to have surgery? If so, what kind of care are you receiving instead? I have read where Sloan Kettering is changing how they treat some stage3 cancer with chemo/radiation, then for those for whom that treatment "killed" the cancer they monitor them closely and only do surgery if the cancer comes back.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nichoebe
Posts: 46
Joined: Fri Dec 18, 2015 7:18 pm
Facebook Username: Michael.Rosenbach

Re: Stage 3 no surgery?

Postby Nichoebe » Sat Jan 16, 2016 3:57 pm

Hello I too was diagnosed stage 3b had chemo radiation then surgery where after I was upgraded to 3a after just about two years the cancerous cells are back at the site of resection so this coming Friday I will be getting surgery again to remove it. Just my two cents as too your situation as far as I go I just want it the hell out of me before it has a chance to become a problem. CEA is not a good indicator for me and in this case now cats an was good and colonoscopy showed no tumor my GI Doctor biopsies the area as it was inflamed had he not I'd be in trouble. It's ultimately your decision whether to monitor it I'm 48 and was younger when first diagnosed so my oncologist was aggressive I'll stop now as I'm probably rambling sorry still jumpy with surgery this week
Good Luck
Mike
Diagnosed colorectal cancer 9/27/13 3B

Chemo/radiation 28days Xeloda Oxaliplatin
Surgery 2/5/14 0/27 nodes upgraded 3A
Negative Lynch
3/28/14 Chemo 5FU Oxaliplatin 6month
9/27/14 ileostomy reversal
Mid October 2014 wound infected
Mid November 2014 Blood Clot Lovenox 6 months
Colonoscopy 2014

December 2015 Colonoscopy
I Can't Believe It's Back
1/22/16 Salvage surgery
Permanent Colostomy
1 week from surgery in hospital insane pain
60 treatments hyperbaric oxygen therapy
6 months Xeloda 5000 mg/day

prs
Posts: 178
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Stage 3 no surgery?

Postby prs » Sat Jan 16, 2016 5:04 pm

Yes, as you can see from ny signature I did not have surgery. You will need to have a complete clinical response to your chemoradiation in order to qualify for the Dr Habr-Gama wait and watch strategy. You will not know if your tumor has completely shunk away until 8-10 weeks after your chemoradiation treatment is finished as the tumor may keep on shrinking for that length of time.

I had a follow up visit with my colorectal surgeon yesterday and was able to have a long chat about Habr-Gama and its growing acceptance among colorectal surgeons. I'll start a new thread on the subject within the next couple of days, once I've been able to put my thoughts together.
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

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sat Jan 16, 2016 7:05 pm

Thank you, Mike, for sharing your experience. I am concerned about the cancer recurring if I wait to have surgery. I understand how you feel about wanting it out right away. It's a tough choice because it sounds like the surgery and recovery aren't fun.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sat Jan 16, 2016 7:08 pm

Peter, what helped you to decide to do the wait and see approach versus surgery? So far my oncologist is not recommending postponing surgery but I want to explore all options.
One of my biggest concerns is my ability to work after surgery...even if my plumbing gets hooked back up correctly, so to speak. I teach and cannot leave my class unattended to have to use the bathroom very often.
Plus, I really don't want to end up with a permanent colostomy.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Stage 3 no surgery?

Postby Lydia666 » Sat Jan 16, 2016 9:36 pm

I just wanted to say that surgery was not too bad for me despite the temporary ileostomy- and i would even take a permanent one if it means I live. Chemo is worse. I am only doing Xeloda and it's not a joy- but doable. However i'd take surgery over months of aggressive chemo! That's my opinion- but i know there is someone on here who really did not want to have surgery and they are still ok.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Stage 3 no surgery?

Postby Sams wife » Sat Jan 16, 2016 10:10 pm

Stage II. Surgeon wanted surgery. Husband didn't. Oncologist said yes! Do surgery. He's had 4 people it came back on with stage 2. He did it, hubby's not to happy about it (ostomy) but it was a good decision. Microscopic cells were still there.
Good luck
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 12:33 am

Lydia666 wrote:I just wanted to say that surgery was not too bad for me despite the temporary ileostomy- and i would even take a permanent one if it means I live. Chemo is worse. I am only doing Xeloda and it's not a joy- but doable. However i'd take surgery over months of aggressive chemo! That's my opinion- but i know there is someone on here who really did not want to have surgery and they are still ok.


Thank you, Lydia. What has been the hardest part of the surgery for you?

Do you know for sure you want have a permanent colostomy?
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 12:34 am

Sams wife wrote:Stage II. Surgeon wanted surgery. Husband didn't. Oncologist said yes! Do surgery. He's had 4 people it came back on with stage 2. He did it, hubby's not to happy about it (ostomy) but it was a good decision. Microscopic cells were still there.
Good luck


Thank you! This is what I need to hear to help me to decide whether to go with surgery or not.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

prs
Posts: 178
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Stage 3 no surgery?

Postby prs » Sun Jan 17, 2016 1:17 am

Nica432 wrote:Thank you! This is what I need to hear to help me to decide whether to go with surgery or not.

Let me repeat; you can't decide until you know how your tumor reacted to the chemoradiation, and you will not know this until 8-10 weeks after your radiation treatment is finished. Trying to go thru all the options now may be stressing you out when what you really need to do is focus your attention on helping your Doctors make your chemoradiation treatment as successful as possible. You have a couple of months after radiation is complete to do your research before any decision might have to be made.

To sum up: if any of the tumor remains then surgery will be required, the type of surgery will depend upon how much of the tumor remains and exactly where the remains are located. Your board certified colorectal surgeon will make this decision, so make sure you have a good one that you trust. Only If the tumor is completely gone will you have a decision to make, and again this decision will be made with the help of your surgeon.

If you are not too sure about your current surgeon there will be plenty of time after radiation is complete to go find another.
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

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Stage 3 no surgery?

Postby Lydia666 » Sun Jan 17, 2016 5:01 am

Nica432 wrote:
Lydia666 wrote:I just wanted to say that surgery was not too bad for me despite the temporary ileostomy- and i would even take a permanent one if it means I live. Chemo is worse. I am only doing Xeloda and it's not a joy- but doable. However i'd take surgery over months of aggressive chemo! That's my opinion- but i know there is someone on here who really did not want to have surgery and they are still ok.


Thank you, Lydia. What has been the hardest part of the surgery for you?

Do you know for sure you want have a permanent colostomy?

The surgery has not been bad at all- i have a couple tiny scratches on my belly and a little cut at the bikini line which i have not even seen. :) the hardest part is the temp ileostomy- it's gross and takes adjustment but u get used to it. I am supposed to have it taken off in june. I certainly don't want a permanent one and really hope i can get rid of it, but I would take it any day if thatymy only option for curative surgery. When it's permanent it's usually a colostomy which is less gross i think. The digestion is complete and you have way less output. With ileo, i empty 10 times a day. Anyway, for me surgery is not the big deal, chemo and rad are more harmful i think. Chemo is pretty gross too. Radiations have permanent damage like menaupose and god knows what other surprises years down the line.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Stage 3 no surgery?

Postby PainInTheAss » Sun Jan 17, 2016 8:01 am

Keep in mind that a clinical complete response is only as far as they can tell. If the biposies they take miss trace cancer cells actually still there, you will be told you have a complete response when you actually don't. That's what they are watching and seeing... if they actually got it all.

I've seen stage IIa's successfully do wait and see, but just be aware that a different stage has significant risk differences.

When you are first diagnosed and first going through treatment, you tend to think in terms of how your life will change. You want it to change as little as possible. I, too, didn't want a permanent colostomy and found myself bargaining with my surgeon about it. He finally said to me, "This is about saving your life." When it really sunk in that the cancer could kill me, I wanted everything out. I want to still be around decades from now to complain about how treatment changed my life. I want to have a life period.

Here are two blogs I read from beginning to end that really drove the seriousness of this home. One of them did the "watch and see" and later regreted it, especially since he did not do well on chemo and would have handled the surgery much better.

http://imsorryforcursing.blogspot.com

http://www.teachingcancertocry.com
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

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 9:44 am

PRS wrote:
Nica432 wrote:Thank you! This is what I need to hear to help me to decide whether to go with surgery or not.

Let me repeat; you can't decide until you know how your tumor reacted to the chemoradiation, and you will not know this until 8-10 weeks after your radiation treatment is finished. Trying to go thru all the options now may be stressing you out when what you really need to do is focus your attention on helping your Doctors make your chemoradiation treatment as successful as possible. You have a couple of months after radiation is complete to do your research before any decision might have to be made.

To sum up: if any of the tumor remains then surgery will be required, the type of surgery will depend upon how much of the tumor remains and exactly where the remains are located. Your board certified colorectal surgeon will make this decision, so make sure you have a good one that you trust. Only If the tumor is completely gone will you have a decision to make, and again this decision will be made with the help of your surgeon.

If you are not too sure about your current surgeon there will be plenty of time after radiation is complete to go find another.


Thanks, Peter. I did realize that I can't make this decision until I know how my tumor reacted. But I'm one if those people that like to look ahead, have time to research and spend a lot of time gathering the info and making a decision. If I dont have a complete response to the chemo/radiation then there's no decision to make. I already know my surgeon isn't on board with the wait and watch approach so, while I am finishing up chemo/radiation I want to hear other people's experience to determine if I want to search out a surgeon who does agree with the wait and watch approach. It takes time to get in for a second consult around here.
Thank you so much for your help.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 9:49 am

PainInTheAss wrote:Keep in mind that a clinical complete response is only as far as they can tell. If the biposies they take miss trace cancer cells actually still there, you will be told you have a complete response when you actually don't. That's what they are watching and seeing... if they actually got it all.

I've seen stage IIa's successfully do wait and see, but just be aware that a different stage has significant risk differences.

When you are first diagnosed and first going through treatment, you tend to think in terms of how your life will change. You want it to change as little as possible. I, too, didn't want a permanent colostomy and found myself bargaining with my surgeon about it. He finally said to me, "This is about saving your life." When it really sunk in that the cancer could kill me, I wanted everything out. I want to still be around decades from now to complain about how treatment changed my life. I want to have a life period.

Here are two blogs I read from beginning to end that really drove the seriousness of this home. One of them did the "watch and see" and later regreted it, especially since he did not do well on chemo and would have handled the surgery much better.

http://imsorryforcursing.blogspot.com

http://www.teachingcancertocry.com


Thank you Panin ( love your handle!). It's these details that I wasn't aware of (missing trace cells) that are important to know.
Thank you for the blogs. I didn't find them when I was doing research.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 9:51 am

Lydia - thanks for letting me know what the ileo is like and how it is different than the colostomy. Are you able to work when you have the ileo if you have to empty it that often?
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily


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